Slide 1 - DAWN Study - Italy

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					      DAWN YOUTH

     Interim results
            in Italy

   Healthcare Professionals,
  Parents/Carers, and Young
Adults with Diabetes Surveys

                March 2008
    Agenda
1   Background
2   Key Objectives
3   Methodology/Sample
4   Young adults/parents/carers
5   Parents/carers
6   Healthcare professionals
7   Conclusions
8   Recommendations
1   Background
Background (1)
• In 2001, Novo Nordisk and IDF conducted the DAWN (Diabetes,
    Attitudes, Wishes and Needs) study involving more than 5400
    diabetes patients, and more than 3800 healthcare professionals in
    13 countries.
•   The main purpose of the research was to identify new ways to
    overcome the psychosocial barriers to optimal health and quality
    of life of people with diabetes and those at risk
•   As a result of the DAWN study, the DAWN programme, a global
    Novo Nordisk initiative in collaboration with the IDF and an
    International Expert Advisory Board was established. The results
    of the study were published in lay and peer-reviewed journals
•   In its continued commitment to people with diabetes, Novo
    Nordisk together with IDF and ISPAD have now undertaken
    another survey to explore perceptions among
     • young adults with diabetes
     • parents of children with diabetes
     • healthcare professionals seeing children with diabetes.
The aim of this DAWN Youth survey
was to
   Gain understanding of the challenges and issues of
    young adults living with diabetes, as well as carers,
    parents and others facing the responsibility of
    supporting them
  • help raise awareness of the unique challenges related
    to management of childhood diabetes
  • inspire new efforts to improve the care for children and
    young people with diabetes and their families
   Identify new avenues for improvements in the context
    of psychosocial management of diabetes among
    children, with a view
   Create a new platform for dialogue among all key
    stakeholders to setup coordinated initiatives
2   Key Objectives
Key Objectives
• Primarily, DAWN Youth was intended to address
 the following challenges:

  • Exploring the attitudes, wishes and needs of young
    adults with diabetes
  • Inspire the work of national and international DAWN
    Youth boards engaged in prioritizing and driving new
    efforts to improve psychosocial support for children with
    diabetes
  • Give input to clinical and national surveys, initiatives
    and awareness programmes
3   Methodology/Sample
Questionnaire development

• Several international dialogue events were held
 with representatives from national DAWN Youth
 boards and leading paediatric diabetologists,
 nurses, psychologists, youth ambassadors,
 parent ambassadors, policy-makers, and
 sociologists from more than 15 countries.
• The DAWN Youth International Steering
 Committee, including IDF and ISPAD, approved
 all the surveys used.
Main overall areas that were assessed

• Regimen adherence
• Psychological wellbeing
• Psychosocial adjustment
• Perceived support by domain
• Health care (teams, relationships, access)
• School environment
• Youth organization/activity involvement
• Needs
    Methodology (1)
   In most countries, online surveys were conducted using a 25-30 minute structured
    questionnaire.
   In Japan, face-to-face interviews were conducted using a 25-30 minute pen & paper
    questionnaire.
   Recruitment was supported by national DAWN Youth committees with the help of
    national patient associations.
   Affiliate offices of Novo Nordisk in each market were responsible for liaising with the
    national committees/associations in contacting and directing the relevant respondent
    types to the web-based online questionnaires. This was done via different strategies
    and specific activities/events set-up in each market to facilitate this process.
   All online questionnaires were set-up in a secure password-protected environment
    and screening questions applied to ensure that only correct/eligible respondents were
    able to access the respective surveys.
   The data for each individual country illustrated within this document shows
    percentages based on the actual country sample size attained in each case. However,
    for combined country data based on the total sample size (columns/ bars labelled
    ‘ALL’), the data is weighted to the ‘average’ sample size achieved per country - so
    that much larger samples attained in some countries do not overtly bias the overall
    findings of the study.
Methodology (2)

Three respondent types were recruited:

   •   Young adults with diabetes aged 18 to 25 years
   •   Parents or caregivers of at least one child or young
       person with diabetes aged between 0 and 18 years
   •   Healthcare professionals, these comprised:
           Paediatricians and paediatric diabetologists
           Diabetologists/endocrinologists/diabetes specialists (treating
            both adults and children)
           General Physicians/internists (treating adult and child
            diabetics)
           Paediatric nurses and paediatric diabetes nurses
           Paediatric dieticians
           Paediatric psychologists
 Sample
       The sample achieved was as follows:

Country:           Healthcare         Parents/       Young adults         TOTAL
                  professionals        Carers        with diabetes
Brazil                 289               653              394             1,336
Denmark                 30               601              204              835
Germany                 78               196              195              469
Italy                   78               147              311              536
Japan                   0                260              235              495
Netherlands             38               252              96               386
Spain                   51               377              154              582
USA                    102              1,613             316             2,031
TOTAL                  666             4,099             1,905            6,670

        The data displayed in these charts are based on all interviews completed
         by 31st January 2008
One eighth of young adults were currently in secondary school;
the majority of parents/carers had a child still in full-time education
                                            % saying YES
Young adults




                     25%
                                        12%                 15%
                                                                                      9%
                                                                                                               4%

                   ALL (1905)        ITA (311)        Aged 0-9 at dx        Aged 10-14 at dx           Aged 15+ at dx
                                                          (174)                  (111)                      (24)




                                                                                     100%                      100%
                                        93%
                      85%
Parents / Carers




                                                             81%




                   ALL (4099)         ITA (147)        Child aged 0-9         Child aged 10-14          Child aged 15+
                                                            (52)                     (65)                     (30)

                            Base: all young adults with diabetes; all parents/carers

                                                       Q39 (YA): Are you currently in secondary school?
                                                       Q21 (PC): Is your child still in full-time education?
             The majority of parents/carers stated that their child with
             diabetes had a sibling/siblings and nearly half reported the
             number to be one brother/sister
                           8%
                                                                       19%
                                                                                                             More than 2
                          24%
Parents / Carers




                                                                                                             2
                                                                       46%

                          48%
                                                                                                             1




                                                                       35%                                   None
                          19%

                        ALL (4099)                                   ITA (147)


                                     Base: all parents/carers



                                                  Q2 (PC): Now thinking specifically of that child/person
                                                  with diabetes, how many brothers and sisters does he/she
                                                  have in total?
             The majority of children with diabetes were boys,
             based on parents’/carers’ responses



                        49%
Parents / Carers




                                                                   57%


                                                                                                     Girl   Boy




                        51%
                                                                   43%



                      ALL (4099)                                ITA (147)


                               Base: all parents/carers



                                             Q4 (PC): Is this child/young person with diabetes a boy or
                                             a girl?
Three-quarters of HCPs currently personally see more than 5
children/adolescents with Type 1 diabetes each week


                           17%                                                                             21+
Healthcare Professionals




                                                                                                           11 to 20
                                                                   41%
                           17%
                                                                                                           6 to 10

                                                                                                           5
                           20%
                                                                   21%
                                                                                                           3 to 4
                           11%
                                                                                                           2
                           11%                                     15%
                                                                                                           1
                           10%                                      6%
                                                                    6%
                           11%                                                                             None
                                                                    6%
                           2%                                       4%
                            ALL                                     ITA
                           (666)                                   (78)

Mean:                       17.3                                    30.6
                                   Base: all healthcare professionals
                                               Q1 (HCP): Approximately how many children/adolescents
                                               with type 1 diabetes do you have under your care that you
                                               personally see in an average week?
Two-fifths of HCPs did not personally see any
children/adolescents with Type 2 diabetes each week; just
over a third saw 1 or 2 Type 2 patients in a week
                             2%
                             3%                                      1%
                                                                     4%
                             4%                                      3%                                     21+
                             6%                                      9%
 Healthcare Professionals




                             7%                                      6%                                     11 to 20
                             8%                                      9%
                                                                                                            6 to 10

                            22%
                                                                                                            5
                                                                    28%

                                                                                                            3 to 4

                                                                                                            2

                            48%
                                                                    40%                                     1

                                                                                                            None


                             ALL                                     ITA
                            (666)                                   (78)

Mean:                        2.8                                     2.7
                                    Base: all healthcare professionals
                                                Q1 (HCP): Approximately how many children/adolescents
                                                with type 2 diabetes do you have under your care that you
                                                personally see in an average week?
    Analysis
4    Young Adults,
      Parents/Carers/HCPs

5   Parents/Carers


6   Healthcare Professionals
        Young Adults,
4
    Parents/carers, HCPs
        Analysis: Young Adults,
         Parents/carers, HCPs
4i       Diabetes, Diagnosis and Control

4ii      Perceptions of Living with Diabetes: QoL

4iii     Issues Related to Diabetes Treatment

4iv      Social, Emotional, Employment Issues

4v       Diabetes Management/HCP Involvement

4vi      Expense of Managing Diabetes/Financial
           Impact
4vii     Education/School Issues

4viii    Support from Various Sources
       Analysis: Young Adults,
        Parents/carers, HCPs
4ix     Value/Opinions on Diabetes-related
          Activities
4x      Information Sources on Diabetes

4xi     Areas for Improvement in Diabetes Care

4xii    Perceptions of Living with Diabetes in
          Future
     Diabetes diagnosis and control
4i
                (YA, PC)
The vast majority of young adults who answered the survey,
or who were being cared for, had type 1 diabetes




                                                                 98%
           Type 1 Diabetes

                                                                     99%




                                    2%
            Type 2 Diabetes

                                    1%                          Young adults
                                                                (311)
                                                                Parents/carers
                                                                (147)

          Base: all young adults with diabetes; all parents/carers


                                  Q1 (YA): Firstly, what type of diabetes do you have?
                                  Q3 (PC): What type of diabetes does this child/young
                                  person with diabetes suffer from?
On average, young adults said they were diagnosed with
diabetes at the age of 9, while parents/carers said their child
was diagnosed at 6 years
           12



                                                       9


                                                                                         Young adults
                        6.4
                                                                  5.7                    Parents/Carers




         (1905)         (4099)                      (311)          (147)
                  ALL                                       ITA


                  Base: all young adults with diabetes; all parents/carers



                                      Q2 (YA): How old were you when you were diagnosed with
                                      diabetes? Q5 (PC): How old was your child when he/she was
                                      diagnosed with diabetes?
  The majority of parents/carers received information on many
  aspects of diabetes, while the majority of young adults only
  received information about the nature of diabetes and eating
  the right food
                                ALL       ITA                                               ALL         ITA
                              (1905)     (311)                                            (4099)       (147)
Information about what                                 Information about what
diabetes is and what it         78%       74%          diabetes is and what it              93%         95%
means to have diabetes                                 means to have diabetes
Information about eating                               Information about eating
                                71%       68%                                               89%         91%
the right type of food                                 the right type of food
Information about the                                  Information and training
                                54%       42%
complications of diabetes                              about how to test blood              89%         91%
                                                       sugars and how frequently
Information and training
about how to test blood         65%       35%          Information about the
                                                                                            72%         77%
sugars and how frequently                              complications of diabetes
Information and education                              Information and education
about treatment and how to      58%       34%          about treatment and how              81%         76%
follow doctor’s orders                                 to follow doctor’s orders
Other information               20%       5%           Other information                    27%         15%
Don’t know                      12%       22%          Don’t know                            2%          2%
       Base: all young adults with diabetes                            Base: all parents/carers


                                              Q3 (YA): What type of training or information did you receive
                                              when you first found out that you had diabetes?
                                              Q43 (PC): What type of training or information did you and your
                                              child receive when you first found out that he/she had diabetes?
          Three-quarters of young adults said their diabetes
          was rarely or never under control
                                                            4%
                     17%                                                                      My diabetes is
                                                           20%                                well under
                                                                                              control
Young adults




                     53%                                                                      My diabetes is
                                                                                              mostly under
                                                                                              control

                                                           76%

                                                                                              My diabetes is
                                                                                              rarely/never
                     30%                                                                      under control




                   ALL (1905)                            ITA (311)



                                Base: all young adults with diabetes
                                   Q4 (YA) : Which of the following statements best describes how
                                   you think you are now dealing with your diabetes
     Perceptions of living with diabetes:
4ii
    Quality of life and well being (YA, PC)
Three-quarters of young adults could talk to parents or
friends, while only 7% could talk to a diabetes doctor
                                             ALL        ITA
                                           (1905)      (311)
            My friends                      47%         73%
            My parents                      56%         72%
            My spouse/partner/
                                            34%         38%
            significant other
            Friends who also have
                                            24%         36%
            diabetes
            My brothers and sisters         22%         30%
            Diabetes nurse                  19%         29%
            Volunteers at the
                                             4%          8%
            diabetes association
            Diabetes doctor                 21%          7%
            GP/family doctor                11%          4%
            Grandparents                     5%          4%
                                                                Excludes country answers less than 4%
               Base: all young adults with diabetes

                               Q5 (YA): At times when you’re feeling frustrated or unhappy
                               about living with your diabetes, who can you talk to about your
                               feelings?
           Only one seventh of young adults said it was very important to
           talk with other people their age who had diabetes like them

                                                                12%                                Very important
                               14%            16%
                   27%                                                            21%              (5)
  Young adults




                                                                                                   Fairly important
                                                                49%
                               50%            52%                                                  (4)
                   31%
                                                                                  54%

                                                                                                   Neither
                                                                                                   important nor
                                                                                                   unimportant / not
                   35%                                                                             very important /
                               34%                              39%
                                              32%                                                  not at all
                                                                                  25%              important (1, 2, 3)
                                                                                                   Don't know
                    6%          1%             1%                1%
                 ALL (1905)   ITA (311)    Aged 0-9 at     Aged 10-14 at Aged 15+ at
                                                                                                       Scale: 1 (Not at all
                                            dx (174)         dx (111)      dx (24)                     important) to 5 (very
                                                                                                       important)
Mean rating:        3.7         3.7             3.8               3.6               3.9

                                 Base: all young adults with diabetes

                                                 Q6 (YA): How important is it for you to talk with other people
                                                 your age who have diabetes like yourself?
  Over a third of young adults said they were satisfied or very
  satisfied with the way they were being treated/or had been
  treated at school

                                                                                                           Satisfied/ very
                                     36%            33%                 36%                                satisfied (4, 5)
                     49%
    Young adults




                                                                                          58%
                                                                                                           Neither / Nor (3)




                     30%             57%            60%                 55%                                Dissatisfied/ very
                                                                                                           dissatisfied (1, 2)

                                                                                          38%
                     14%                                                                                   Don't know

                      8%             5%              4%                  7%
                                     2%              2%                  2%                4%
                   ALL (1905)      ITA (311)     Aged 0-9 at       Aged 10-14 at Aged 15+ at
                                                  dx (174)           dx (111)      dx (24)
Mean rating:          3.5             3.4            3.3                  3.3               3.6           Scale: 1 (very dissatisfied)
                                                                                                          to 5 (very satisfied)


                                Base: all young adults with diabetes
                                                           Q7d (YA): How satisfied are you with …. the way you
                                                           are (were) treated at school?
 The majority of young adults and carers were satisfied or very
 satisfied with support from the young person’s/child’s friends
                                                                                                       Satisfied/ very
                                                                                                       satisfied (4, 5)
   Young adults



                          61%                                         63%
                                                                                                       Neither / Nor (3)




                                                                                                       Dissatisfied/ very
                                                                                                       dissatisfied (1, 2)

                          28%
                                                                      32%
                                                                                                       Don't know

                           7%
                           4%                                          5%
                                                                       1%
                       ALL (1905)                                   IT A (311)
                                                                                                 Scale: 1 (very dissatisfied)
Mean rating:               3.8                                         3.7                       to 5 (very satisfied)


                                                                                                      Satisfied/ very
   Parents / Carers




                                                                                                      satisfied (4, 5)


                          62%                                        59%
                                                                                                      Neither / Nor (3)




                                                                                                      Dissatisfied/ very
                                                                                                      dissatisfied (1, 2)

                          25%                                        27%
                                                                                                      Don't know

                           8%                                         8%
                           5%                                         5%
                       ALL (4099)                                 IT A (147)



Mean rating:               3.8                                         3.6

                      Base: all young adults with diabetes; all parents/carers
                                               Q7c (YA): How satisfied are you with …. the support
                                               you receive from your peers/friends? Q12a (PC):
                                               How satisfied are you with …. the support your child
                                               receives from his/her peers/friends?
      The majority of parents and young adults were satisfied or very
      satisfied with the level of support they received from doctors
                                                                                                   Satisfied/ very
                                                                                                   satisfied (4, 5)
   Young adults



                           72%                                      68%                            Neither / Nor (3)




                                                                                                   Dissatisfied/ very
                                                                                                   dissatisfied (1, 2)



                           19%                                      29%                            Don't know


                           9%
                           1%                                        2%
                        ALL (1905)                                IT A (311)

Mean rating:               3.9                                         3.8                        Scale: 1 (very dissatisfied)
                                                                                                  to 5 (very satisfied)


                                                                                                        Satisfied/ very
   Parents / Carers




                                                                                                        satisfied (4, 5)



                                                                                                        Neither / Nor (3)
                            77%                                           78%


                                                                                                        Dissatisfied/ very
                                                                                                        dissatisfied (1, 2)




                            14%                                           15%                           Don't know


                             7%                                              6%
                             1%                                              1%
                          ALL (4099)                                    ITA (147)


Mean rating:                 4.0                                             4.0


                      Base: all young adults with diabetes; all parents/carers
                                                Q7a (YA): How satisfied are you with …. the support
                                                you receive from your doctors/other healthcare
                                                professionals? Q12d (PC): How satisfied are you with
                                                …. the support you receive from your child’s doctors?
Four-fifths of young adults were satisfied or very satisfied with the
support they received from their parents/family



                                                                                   Satisfied/ very
                                                                                   satisfied (4, 5)
  Young adults




                                                                                   Neither / Nor (3)
                     78%                                 80%


                                                                                   Dissatisfied/ very
                                                                                   dissatisfied (1, 2)




                     15%                                                           Don't know
                                                         18%
                      7%
                      1%                                 2%
                   ALL (1905)                          ITA (311)

Mean rating:          4.1                                4.0


                                                                                      Scale: 1 (very dissatisfied)
                      Base: all young adults with diabetes
                                                                                      to 5 (very satisfied)

                                      Q7b (YA): How satisfied are you with …. the support
                                      you receive from your parents/family?
    Nearly three-fifths of parents/carers were satisfied or very
    satisfied with the support they received from their friends



                                                                                                      Satisfied/ very
                                                                                                      satisfied (4, 5)
  Parents / Carers




                       59%                                          58%
                                                                                                      Neither / Nor (3)




                                                                                                      Dissatisfied/ very
                                                                                                      dissatisfied (1, 2)

                       29%                                          34%
                                                                                                      Don't know

                        8%                                           6%
                        3%                                           2%
                     ALL (4099)                                  ITA (147)


Mean rating:            3.7                                          3.6                        Scale: 1 (very dissatisfied)
                                                                                                to 5 (very satisfied)
                                  Base: all parents/carers

                                               Q12c (PC): How satisfied are you with …. the support
                                               you receive from your friends?
                    A third of parents/carers were satisfied or very satisfied with
                    the support they received from employers


                                                                                              23%                Satisfied/ very
                                       33%               39%               33%                                   satisfied (4, 5)
                           45%
 Parents / Carers




                                                                                              23%                Neither / Nor (3)

                                       27%                                 32%
                                                         23%
                           24%                                                                20%
                                                          2%                                                     Dissatisfied/ very
                                       13%                                                                       dissatisfied (1, 2)
                           11%                                             20%
                                                         37%                                  33%
                                       27%                                                                       Don't know
                           19%                                             15%

                         ALL (4099)   ITA (147)      Child aged 0-       Child aged       Child aged
                                                         9 (52)          10-14 (65)        15+ (30)

Mean rating:                3.6         3.3                 3.8              3.2               3.1

                                                                                                          Scale: 1 (very dissatisfied)
                                                                                                          to 5 (very satisfied)
                                              Base: all parents/carers


                                                          Q12e (PC): How satisfied are you with …. the support
                                                          that you, as a parent, receive from your employer?
    On average, young adults believed they had a good
    quality of life

      10 – top/best                                                                                  Mean scores


                                                                                                                7.5
                                                7.1                   7                  7.1
                                6.8
Young adults




               1 – bottom/
               worst
                             ALL (1905)      ITA (311)         Aged 0-9 at        Aged 10-14 at Aged 15+ at
                                                                dx (174)            dx (111)      dx (24)


                             Base: all young adults with diabetes                                    Scale: 1 (bottom-worst) to
                                                                                                     10 (top-best)
                                                      Q8 (YA): Below is a picture of a ladder. The top step
                                                      indicates the best possible life, and the bottom
                                                      indicates the worst possible life: where on this ladder
                                                      would you place your life today?
Over four-fifths of young adults and three-fifths of carers judged their general well
being over the last two weeks to be good, based on the WHO-5 measure of well-being
                                                                                                                                         Good well-being
                                                                                                                                         (more than 50)
   Young adults


                         65%
                                            86%                85%                       86%
                                                                                                                  96%                    Poor well-being
                                                                                                                                         (28-50)




                         27%                                                                                                             Likely
                                                                                                                                         depression (less
                                            12%                13%                       13%                                             than 28)
                         8%                  2%                 2%                                                 4%
                                                                                          1%
                      ALL (1905)          IT A (311)       Aged 0-9 at           Aged 10-14 at              Aged 15+ at
                                                            dx (174)               dx (111)                   dx (24)


 Mean rating:            56.4                61.4                60.5                     61.8                      65.8



                                                                                                                                        Good well-being
   Parents / Carers




                                                                                                                                        more than 50)
                                                    52%                                           52%
                      60%          60%                         60%                                                  65%
                                                                                73%

                                                                                                                                        Poor well-being
                                                                                                                                        (28-50)

                                                    31%                                           30%
                      28%          27%                         31%
                                                                                13%                                 25%

                                                    17%                                           17%                                   Likely
                      13%          13%                          9%              13%                                 10%                 depression (less
                                                                                                                                        than 28)
                       ALL      IT A (147)     Child          Child            Child            M ale            Female
                      (4099)                  aged 0-9        aged           aged 15+         child (63)        child (84)
                                                (52)        1014 (65)           (30)



Mean rating:           53.8        52.5             50.1         53.3             55.2              50.0               54.5

                                                     Base: all young adults with diabetes; all parents/carers
                                                            Q9 (YA): Please look at the following statements about how people sometimes
                                                             feel. For each of them, please tell me how often you have felt like this during the
                                                             last two weeks… I have felt cheerful and in good spirit Q11 (PC) Please look at
                                                             the following statements about how people sometimes feel. For each of them,
                                                             please tell me how often you have felt like this during the last two weeks … I have
                                                             felt cheerful and in good spirit
       Young adults who were more satisfied with the level of support
       they received from HCPs achieved higher WHO-5 scores


                                                                                       62.4
                  Very satisfied
                                                                                       61.8
Satisfaction                                                                                           Mean scores based
with level of                                                                                          on WHO-5 scale of
                                                                                55.9
support from           Satisfied                                                                       wellbeing
                                                                                    63.9
HCPs
                      Neither
                                                                            52.6
                   satisfied nor
                                                                               58.4
   Young adults




                    dissatisfied


                                                                         49.3
                    Dissatisfied
                                                           37

                                                                                            All (1905)
                       Very                                      46.4
                    dissatisfied                             38.7                           Italy (311)



                                   Base: all young adults with diabetes
                                           Q7a (YA): How satisfied are you with …. the support you receive from your
                                           doctors/other healthcare professionals?
                                           Q9 (YA): Please look at the following statements about how people sometimes
                                            feel. For each of them, please tell me how often you have felt like this during the
                                            last two weeks…
               Amongst parents/carers, those who were dissatisfied or very
               dissatisfied with the level of support from HCPs achieved lower
               WHO-5 scores


                                                                                       58.5
                      Very satisfied
                                                                                52
Satisfaction                                                                                               Mean scores based
with level of                                                                                              on WHO-5 scale of
                                                                                 53.1
support from               Satisfied                                                                       wellbeing
                                                                                 53.4
HCPs
                          Neither
                                                                               50.5
                       satisfied nor
   Parents / Carers




                        dissatisfied
                                                                                        59.5


                                                                    42.7
                        Dissatisfied
                                                                  38.7

                                                                                                All (4099)
                           Very                                    39.6
                        dissatisfied                      32                                    Italy (147)



                                       Base: all parents/carers
                                           Q11 (PC) Please look at the following statements about how people sometimes feel. For
                                                each of them, please tell me how often you have felt like this during the last two
                                                weeks …
                                                Q12d (PC): How satisfied are you with …. the support you receive from your
                                                child’s doctors?
            Issues related to
4iii
       diabetes treatment (YA, PC)
             For half of young adults their target HbA1c is 6; for two-fifths of
             parents/carers, their child’s target HbA1c is 6 or 6.5
                              8%                                         4%
                                                                         7%                                7.5 or more

                             17%
Young adults


                                                                                                           7
                                                                        35%
                             23%                                                                           6.5


                                                                                                           6

                             29%
                                                                        49%                                5.5 or less


                             15%                                                                           Don't know / not
                                                                                                           stated
                              8%                                         3%
                                                                         2%
                          ALL (1905)                                  IT A (311)




                             16%                                         18%                               7.5 or more
Parents / Carers




                                                                                                           7
                             28%                                         27%
                                                                                                           6.5



                             21%                                         20%                               6



                                                                                                           5.5 or less
                             18%                                         19%
                              7%                                          7%                               Don't know / not
                                                                                                           stated
                             10%                                          8%
                          ALL (4099)                                  IT A (147)




                          Base: all young adults with diabetes; all parents/carers


                                                    Q14 (YA): What level of HbA1c do you try to achieve?
                                                    Q17 (PC) What is your child’s target HbA1c level?
             Half the young adults with diabetes took their insulin by pen, and
             three-quarters of parents/carers said their child took insulin by pen

                                                                                                         Pen only
Young adults



                             48%                                        49%
                                                                                                         Pump only



                                                                                                         Syringe only

                             23%
                                                                                                         Pen & syringe
                                                                        45%
                             12%
                              9%                                                                         Other

                              8%                                         1%
                                                                         4%
                                                                         1%
                          ALL (1905)                                 IT A (311)
Parents / Carers




                                                                                                              Pen


                            57%
                                                                        74%
                                                                                                              Pump




                                                                                                              Syringe
                            27%
                                                                        21%
                                                                                                              Other
                            22%
                                                                        16%
                             2%                                          1%
                          ALL (4099)                                 IT A (147)




                          Base: all young adults with diabetes; all parents/carers


                                                   Q10 (YA): How do you take your diabetes medication?
                                                   Q13 (PC) Now thinking of your child’s medication, how is
                                                   your child’s diabetes medication administered?
             Over four-fifths of young adults with diabetes using pens, pumps or
             syringes take 4-6 insulin shots/boluses per day
                               9%
                                                                                                         More than 6
Young adults



                                                                                                         shots



                                                                                                         4 - 6 shots
                              67%                                       87%

                                                                                                         1 - 3 shots




                                                                                                         DK/Not stated
                              20%
                                                                        11%
                               4%                                        1%
                              ALL                                        IT A

            Base:             1860                                       311


                                                                          1%
                              13%
                                                                                                          More than 6
Parents / Carers




                                                                                                          shots



                                                                                                          4 - 6 shots

                              62%                                        84%

                                                                                                          1 - 3 shots




                                                                                                          DK/Not stated
                              22%
                                                                         13%
                               2%                                         1%
                               ALL                                        IT A


        Base:                  4056                                       147

                       Base: all who use pens/pumps/syringes; all whose diabetes child uses pens/pumps/syringes
                                                    Q11 (YA): How many insulin shots or boluses do you
                                                    usually take each day? Q14 (PC) How many insulin shots or
                                                    boluses does your child usually receive each day?
             The majority of young adults monitored their blood glucose 5-8 times per day;
             the majority of parents/carers said their child monitored it 5-8 times a day
                              3%
                                                                                                         More than 8
                                                                                                         times
                             34%
Young adults



                                                                         53%                             5 - 8 times



                                                                                                         1 - 4 times



                             54%                                                                         At no time

                                                                         47%
                                                                                                         Don't know/Not
                                                                                                         stated
                              6%
                              2%
                           ALL (1905)                                 IT A (147)




                              7%
                                                                                                          More than 8
                                                                                                          times
Parents / Carers




                                                                                                          5 - 8 times
                             53%                                         61%

                                                                                                          1 - 4 times



                                                                                                          At no time

                             37%                                         39%
                                                                                                          Don't know/not
                                                                                                          stated
                              1%
                              3%
                           ALL (4099)                                  IT A (311)




                                Base: all young adults with diabetes; all parents/carers

                                                    Q12 (YA): How many times do you usually monitor your
                                                    blood glucose each day? Q15 (PC) In a typical day, how
                                                    many times does your child/do you monitor his/her blood
                                                    glucose?
              The majority of young adults and parents said that their/their
              child’s current level of HbA1c was 7.5 – 8.5
                                                                          3%
                           16%                                                                            more than 8.5
Young adults




                           38%                                                                            7.5 - 8.5

                                                                         79%

                                                                                                          less than 7.5


                           37%
                                                                                                          Don't know / not
                                                                                                          stated
                                                                         16%
                            9%
                                                                          2%
                         ALL (1905)                                   IT A (311)




                                                                          7%
                            13%
                                                                                                          more than 8.5
Parents / Carers




                            42%                                          55%                              7.5 - 8.5




                                                                                                          less than 7.5


                            37%
                                                                         30%
                                                                                                          Don't know / not
                                                                                                          stated

                            7%                                            7%
                         ALL (4099)                                    IT A (147)




                          Base: all young adults with diabetes; all parents/carers


                                                 Q13 (YA): What is your current or latest level of HbA1c?
                                                 Q16 (PC) What is your child’s current or latest HbA1c level?
 Overall, in both age groups, HCPs estimated that about one
 half of children/adolescents under their care had adequate
 levels of HbA1C

Healthcare Professionals




                                                              54.6
      All
    (666)                                             48.3


                                                                      Patients aged 0-12 years
                                                                      Patients aged 13-18 years

                                                  45.5
    Italy
    (78)                                                     52.6




                           Base: all healthcare professionals

                                       Q4 (HCP): What percentage of the children/adolescents
                                       with diabetes under your care, aged 0-12 years and aged
                                       13-18 years have adequate levels of HbA1c?
                  An average level of HbA1c in these HCPs’ patients under 13
                  years was 7.4 and in patients aged 13-18 years it was 7.8
  Patients 0-12 years

                                                                                                         8.0 or over
                                34%                                        33%

                                                                                                         7.5


                                                                           22%
                                30%                                                                      6.0/6.5/7.0



                                                                                                         5.5 or less
                                24%                                        36%

                                 4%                                                                      Don't know
                                                                             1%
                                 9%                                          8%
                                 ALL                                         IT A

                                (666)                                      (78)
Mean level:                       7.5                                        7.4
   Patients 12-18 years




                                                                                                         8.0 or over


                               73%                                        53%
                                                                                                         7.5



                                                                                                         6.0/6.5/7.0

                               17%
                               11%                                        28%                            5.5 or less
                                2%

                               35%                                        15%                            Don't know

                                                                           4%
                                ALL                                        IT A
                                (666)                                      (78)
Mean level:                     8.1                                        7.8

                                        Base: all healthcare professionals

                                                    Q5 (HCP): On average, what level of HbA1c do these
                                                    children aged 0-12 years and 13-18 years have?
Almost half of young adults and three-fifths of parents/carers
were satisfied with the medicines available for diabetes
                                                                    73%
     67%
       66%                                                        67%
                      61%                            59%                                 % satisfied (4) or
                                     58%
                                                                                         very satisfied (5)
                                                52%
                  48%
                                 43%
                                                                                     Young adults
                                                                                     Parents/Carers




        ALL          ITA          Age 0-9       Age 10-14          Age 15+              Age of diabetes child/
    (1905) (4099) (311) (147)    (52) (174)     (65) (111)         (30) (24)            Age of young adult at
                                                                                        diagnosis
           Base: all young adults with diabetes; all parents/carers


                                       Q15 (YA): Using a scale of 5-1, where 5 means very
                                       satisfied and 1 means very dissatisfied, how satisfied are
                                       you with…the medicines available for your diabetes?
                                       Q18 (PC) Using a scale of 5-1, where 5 means very
                                       satisfied and 1 means very dissatisfied, how satisfied are
                                       you with…the medicines available for your child’s diabetes?
Approximately half of young adults and three-fifths of
parents/carers expressed satisfaction with equipment
available for measuring blood sugar

                                                                 77%
      70%                                                      71%                    % satisfied (4) or
        66%                                                                           very satisfied (5)
                       62%                          62%

                                     52%       50%
                   48%
                                 44%                                             Young adults
                                                                                 Parents/Carers




         ALL          ITA         Age 0-9      Age 10-14        Age 15+             Age of diabetes child/
    (1905) (4099) (311) (147)   (52) (174)     (65) (111)      (30) (24)            Age of young adult at
                                                                                    diagnosis
           Base: all young adults with diabetes; all parents/carers



                                        Q15 (YA): Using a scale of 5-1, where 5 means very satisfied
                                        and 1 means very dissatisfied, how satisfied are you with…the
                                        equipment available for measuring blood sugar?
                                        Q18 (PC) Using a scale of 5-1, where 5 means very satisfied
                                        and 1 means very dissatisfied, how satisfied are you with…the
                                        equipment available for measuring blood sugar?
About half of young adults and parents/carers were
satisfied with devices available for diabetes

                                                                73%
                                                              71%

     62%                                                                             % satisfied (4) or
       59%                                                                           very satisfied (5)
                      55%
                                  50%           51%
                                              51%
                  48%
                                44%
                                                                                Young adults
                                                                                Parents/Carers




        ALL          ITA         Age 0-9      Age 10-14        Age 15+             Age of diabetes child/
   (1905) (4099) (311) (147)   (52) (174)     (65) (111)      (30) (24)            Age of young adult at
                                                                                   diagnosis
          Base: all young adults with diabetes; all parents/carers


                                       Q15 (YA): Using a scale of 5-1, where 5 means very satisfied
                                       and 1 means very dissatisfied, how satisfied are you with…the
                                       devices available for your child’s diabetes?
                                       Q18 (PC) Using a scale of 5-1, where 5 means very satisfied
                                       and 1 means very dissatisfied, how satisfied are you with…the
                                       devices available for your child’s diabetes?
Less than half of young adults with diabetes considered their control
of blood sugar compared to HCP recommendations to be successful,
compared to just over three-fifths of parents/carers

                                                                    62%

                           54%
                                                                                  % stating successful (4)
                47%                                    46%                        or very successful (5)


                                                                                       Young adults
                                                                                       Parents/Carers




               (1905)                                  (311)        (147)
                        ALL (4099)                            ITA



             Base: all young adults with diabetes; all parents/carers


                                     Q16 (YA): In terms of managing your diabetes, how successful do
                                     you think you are compared to what your healthcare professionals
                                     have recommended in the areas of…? Q19 (PC): In terms of
                                     managing your child’s diabetes, how successfully managed do you
                                     think your child’s diabetes is, compared to what the healthcare
                                     professionals recommend, in the areas of…?
Two-thirds of HCPs reported that children/adolescents
successfully control their blood sugars most, if not all of the
time
                                                                      70%
% stating all/almost all/ most
children/ adolescents are




                                 49%


                                                                                                      % of HCPs
successful




                                  ALL                                   ITA
                                 (666)                                  (78)

                                   Base: all healthcare professionals

                                               Q3 (HCP): In your opinion, what proportion of the
                                               children/adolescents with diabetes who you see
                                               successfully achieves the following aspects of their
                                               diabetes management (with or without help from their
                                               family or others) … Controlling his/her blood sugar?
About three-fifths of young adults and four-fifths of
parents/carers felt they/their children were successful in
taking their medication as recommended by HCPs

                          77%                                  79%
              73%                                                           % stating successful (4)
                                                                            or very successful (5)
                                                  61%


                                                                                  Young adults
                                                                                  Parents/Carers




              (1905)    (4099)                    (311)        (147)
                    ALL                                  ITA


            Base: all young adults with diabetes; all parents/carers


                                  Q16 (YA): In terms of managing your diabetes, how successful do
                                  you think you are compared to what your healthcare professionals
                                  have recommended in the areas of…? Q19 (PC): In terms of
                                  managing your child’s diabetes, how successfully managed do you
                                  think your child’s diabetes is, compared to what the healthcare
                                  professionals recommend, in the areas of…?
Almost all the HCPs believed that children/adolescents were
successful in taking their medication as required most of the
time, if not all the time
                                                                       93%
% stating all/almost all/ most




                                 73%
children/ adolescents are




                                                                                                     % of HCPs
successful




                                  ALL                                    ITA
                                 (666)                                   (78)

                                   Base: all healthcare professionals

                                               Q3 (HCP): In your opinion, what proportion of the
                                               children/adolescents with diabetes who you see
                                               successfully achieves the following aspects of their
                                               diabetes management (with or without help from their
                                               family or others) … Taking his/her medication as required?
Monitoring blood sugar as part of recommended diabetes
management was judged to be successful by half of young
adults and nearly three-quarters of parents/carers

                                        75%            77%
                          72%                                     71%          % stating successful (4)
            66%
                                                                               or very successful (5)
                                                                       56%
         52%
                      47%                          47%
                                   44%                                              Young adults
                                                                                    Parents/Carers




           ALL           ITA         Age 0-9      Age 10-14        Age 15+             Age of diabetes child/
        (1905)(4099) (311) (147)    (52) (174)      (65) (111)     (30) (24)           Age of young adult at
                                                                                       diagnosis
            Base: all young adults with diabetes; all parents/carers

                                   Q16 (YA): In terms of managing your diabetes, how successful do
                                   you think you are compared to what your healthcare professionals
                                   have recommended in the areas of…? Q19 (PC): In terms of
                                   managing your child’s diabetes, how successfully managed do you
                                   think your child’s diabetes is, compared to what the healthcare
                                   professionals recommend, in the areas of…?
Four-fifths of HCPs said children/adolescents successfully
monitor their blood sugar most, if not all of the time

                                                                      82%
% stating all/almost all/ most




                                 67%
children/ adolescents are




                                                                                                      % of HCPs
successful




                                  ALL                                   ITA
                                 (666)                                  (78)

                                   Base: all healthcare professionals

                                               Q3 (HCP): In your opinion, what proportion of the
                                               children/adolescents with diabetes who you see
                                               successfully achieves the following aspects of their
                                               diabetes management (with or without help from their
                                               family or others) … Monitoring his/her blood sugar?
Around half of young adults with diabetes and half of
parents/carers thought they/their children were successful in
eating the right amount of food to ensure good diabetes
management
                                   65%
                                                                       63%

            55%
                       50%                                                     % stating successful (4)
                                                   48%                         or very successful (5)
                     45%                44%          45%
         42%

                                                                                    Young adults
                                                                                    Parents/Carers
                                                                  26%




           ALL          ITA          Age 0-9      Age 10-14        Age 15+             Age of diabetes child/
        (1905)(4099) (311) (147)    (52) (174)      (65) (111)     (30) (24)           Age of young adult at
                                                                                       diagnosis
            Base: all young adults with diabetes; all parents/carers


                                   Q16 (YA): In terms of managing your diabetes, how successful do
                                   you think you are compared to what your healthcare professionals
                                   have recommended in the areas of…? Q19 (PC): In terms of
                                   managing your child’s diabetes, how successfully managed do you
                                   think your child’s diabetes is, compared to what the healthcare
                                   professionals recommend, in the areas of…?
Two-fifths of young adults and three-fifths of parents/carers
thought young adults’ diet management was successful in
terms of eating the right type of food, based on HCP
recommendations

                                       67%
                                                                  63%          % stating successful (4)
                         59%                           60%
            56%                                                                or very successful (5)


         41%         43%           42%            43%                 43%
                                                                                   Young adults
                                                                                   Parents/Carers




           ALL          ITA         Age 0-9       Age 10-14       Age 15+              Age of diabetes child/
        (1905)(4099) (311) (147)    (52) (174)      (65) (111)     (30) (24)           Age of young adult at
                                                                                       diagnosis
            Base: all young adults with diabetes; all parents/carers (not Japan)


                                   Q16 (YA): In terms of managing your diabetes, how successful do
                                   you think you are compared to what your healthcare professionals
                                   have recommended in the areas of…? Q19 (PC): In terms of
                                   managing your child’s diabetes, how successfully managed do you
                                   think your child’s diabetes is, compared to what the healthcare
                                   professionals recommend, in the areas of…?
Just over a half of HCPs stated that all/almost all/most of
their patients succeeded in eating healthily (avoiding too
much fat and sugar)
                                                                        55%
% stating all/almost all/ most
children/ adolescents are




                                 35%

                                                                                                      % of HCPs
successful




                                  ALL                                    ITA
                                 (666)                                   (78)

                                   Base: all healthcare professionals

                                               Q3 (HCP): In your opinion, what proportion of the
                                               children/adolescents with diabetes who you see
                                               successfully achieves the following aspects of their
                                               diabetes management (with or without help from their
                                               family or others) … Eating healthily (avoiding too much fat
                                               and sugar)?
The biggest discrepancy in opinions of successful management of diabetes
was evident for achieving an adequate level of exercise; less than two-fifths
of young adults reported success compared to over three-fifths of
parents/carers

                                                           65%             64%
                63%          62%
                                            58%                                    % stating successful (4)
                                                                      54%          or very successful (5)


                         39%           39%
             36%                                       37%
                                                                                        Young adults
                                                                                        Parents/Carers




               ALL          ITA          Age 0-9       Age 10-14       Age 15+           Age of diabetes child/
          (1905)(4099) (311) (147)    (52) (174)      (65) (111)     (30) (24)           Age of young adult at
                                                                                         diagnosis
                Base: all young adults with diabetes; all parents/carers


                                     Q16 (YA): In terms of managing your diabetes, how successful do
                                     you think you are compared to what your healthcare professionals
                                     have recommended in the areas of…? Q19 (PC): In terms of
                                     managing your child’s diabetes, how successfully managed do you
                                     think your child’s diabetes is, compared to what the healthcare
                                     professionals recommend, in the areas of…?
Less than one-third of HCPs thought children/adolescents
were successful getting enough exercise most, if not all of the
time
% stating all/almost all/ most
children/ adolescents are




                                                                      31%
                                 30%
                                                                                                      % of HCPs
successful




                                  ALL                                   ITA
                                 (666)                                  (78)

                                   Base: all healthcare professionals

                                               Q3 (HCP): In your opinion, what proportion of the
                                               children/adolescents with diabetes who you see
                                               successfully achieves the following aspects of their
                                               diabetes management (with or without help from their
                                               family or others) … Getting enough exercise?
Two-fifths of young adults with diabetes thought they were
successful in managing high and low blood sugars as
recommended and nearly three fifths of their parents agreed
                                                                                 % stating successful (4)
                                                                                 or very successful (5)
                                                                         67%
             59%           59%                            60%        58%
           53%                            53%


                       38%            36%            37%                              Young adults
                                                                                      Parents/Carers




             ALL          ITA          Age 0-9       Age 10-14       Age 15+           Age of diabetes child/
        (1905)(4099) (311) (147)    (52) (174)      (65) (111)     (30) (24)           Age of young adult at
                                                                                       diagnosis
              Base: all young adults with diabetes; all parents/carers


                                   Q16 (YA): In terms of managing your diabetes, how successful do
                                   you think you are compared to what your healthcare professionals
                                   have recommended in the areas of…? Q19 (PC): In terms of
                                   managing your child’s diabetes, how successfully managed do you
                                   think your child’s diabetes is, compared to what the healthcare
                                   professionals recommend, in the areas of…?
More than half of HCPs reported that children/adolescents
successfully manage high and low blood sugars most, if not
all of the time
% stating all/almost all/ most




                                 55%
children/ adolescents are




                                                                      53%



                                                                                                      % of HCPs
successful




                                  ALL                                   ITA
                                 (666)                                  (78)

                                   Base: all healthcare professionals

                                               Q3 (HCP): In your opinion, what proportion of the
                                               children/adolescents with diabetes who you see
                                               successfully achieves the following aspects of their
                                               diabetes management (with or without help from their
                                               family or others) … Managing high/low blood sugars?
Only a third of young adults, but two-thirds of parents/carers
judged themselves/their child to be successful in coping with
their diabetes in general

                                                                          80%
                                                           72%
                            68%                                                     % stating successful (4)
                                                                                    or very successful (5)
                                           57%                        59%
             56%
           56%

                                                                                       Young adults
                        36%                           36%                              Parents/Carers
                                       33%




              ALL           ITA         Age 0-9       Age 10-14        Age 15+        Age of diabetes child/
           (1905)(4099) (311) (147)     (52) (174)      (65) (111)     (30) (24)      Age of young adult at
                                                                                      diagnosis
               Base: all young adults with diabetes; all parents/carers


                                  Q16 (YA): In terms of managing your diabetes, how successful do
                                  you think you are compared to what your healthcare professionals
                                  have recommended in the areas of…? Q19 (PC): In terms of
                                  managing your child’s diabetes, how successfully managed do you
                                  think your child’s diabetes is, compared to what the healthcare
                                  professionals recommend, in the areas of…?
Less than a quarter of HCPs thought children/adolescents
were successful at coping emotionally with their diabetes
most, if not all of the time

                                 30%
% stating all/almost all/ most
children/ adolescents are




                                                                      23%


                                                                                                      % of HCPs
successful




                                  ALL                                   ITA
                                 (666)                                  (78)

                                   Base: all healthcare professionals

                                               Q3 (HCP): In your opinion, what proportion of the
                                               children/adolescents with diabetes who you see
                                               successfully achieves the following aspects of their
                                               diabetes management (with or without help from their
                                               family or others) … Coping emotionally with his/her
                                               diabetes?
Half of HCPs estimated children/adolescents to be successful
managing their diabetes at school most, if not all of the time


                                                                       50%
% stating all/almost all/ most




                                 40%
children/ adolescents are




                                                                                                    % of HCPs
successful




                                  ALL                                    ITA
                                 (666)                                  (78)

                                   Base: all healthcare professionals

                                               Q3 (HCP): In your opinion, what proportion of the
                                               children/adolescents with diabetes who you see
                                               successfully achieves the following aspects of their
                                               diabetes management (with or without help from their
                                               family or others) … Managing his/her diabetes at school?
    Social/emotional/employment
4iv
            issues (YA, PC)
Almost all the young adults felt having diabetes caused
them no or only some embarrassment


                  8%                                           4%
                                                               3%
                  8%                                                                        All / most of
                                                                                            the time (4
                                                                                            or 5)
Young adults




                                                                                            Half the
                                                                                            time (3)

                                                               93%
                 83%                                                                        Never/Some
                                                                                            times (1 or
                                                                                            2)

                                                                                            Don't know/
                                                                                            depends

                  1%                                           1%
               ALL (1905)                                   ITA (311)
                                                                                        Scale: 1 (never) to
Mean rating:      1.8                                           1.4                     5 (all the time)


                        Base: all young adults with diabetes

                                   Q17 (YA): How often does having diabetes make you feel
                                   embarrassed?
Almost all young adults felt discrimination against them
because of their diabetes was never or only sometimes
an issue

                  7%                                             3%
                                                                 2%
                  6%                                                                        All / most of
                                                                                            the time (4
                                                                                            or 5)
Young adults




                                                                                            Half the
                                                                                            time (3)

                                                                95%
                 84%
                                                                                            Never/Some
                                                                                            times (1 or
                                                                                            2)

                                                                                            Don't know/
                                                                                            depends
                  3%                                             1%
               ALL (1905)                                     ITA (311)
                                                                                          Scale: 1 (never) to
Mean rating:      1.8                                            1.4                      5 (all the time)


                        Base: all young adults with diabetes

                                    Q18 (YA): How often do you feel discriminated against because you
                                    have diabetes?
Almost all young adults said that their diabetes never or only
sometimes limited their social relationships and friendships



                   5%                                           2%
                                                                3%
                   7%                                                                         All / most of
                                                                                              the time (4
                                                                                              or 5)
Young adults




                                                                                              Half the
                                                                                              time (3)


                  85%                                          95%
                                                                                              Never/Some
                                                                                              times (1 or
                                                                                              2)

                                                                                              Don't know/
                                                                                              depends

                   3%
                ALL (1905)                                  ITA (311)
                                                                                             Scale: 1 (never) to
Mean rating:       1.7                                          1.4                          5 (all the time)


                     Base: all young adults with diabetes

                                  Q19 (YA): How often does your diabetes limit your social
                                  relationships and friendships?
               Three-quarters of young adults were not currently working;
               diabetes only had a major/moderate impact on work for 3%


                                                                      3%
                            20%                                      12%                            Major / moderate
                                                                                                    impact
                                                                     10%
Young adults




                            32%                                                                     Minor impact




                                                                                                    No impact
                            24%                                      74%


                                                                                                    Not currently
                            24%                                                                     working



                          ALL (1905)                               ITA (311)



                                  Base: all young adults with diabetes


                                             Q20 (YA): How much impact does your diabetes have on your
                                                 performance at work?
         Almost half of parents/carers had their work
         disrupted to some extent by their child’s diabetes


                                                                                                A lot / somewhat
                                                                25%                             (3, 4)
 Parents / Carers




                      46%
                                                                                                A little (2)
                                                                22%


                      28%                                                                       Not at all (1)
                                                                35%

                      17%                                                                       Not applicable /
                                                                                                don't know
                                                                16%
                       9%
                    ALL (4099)                                IT A (147)
Mean rating:           2.5                                       1.9
                                                                                                Scale: 1 (not at all)
                                                                                                to 4 (a lot)
                             Base: all parents/carers


                                   Q45 (PC): How much has your child’s diabetes disrupted your work?
               Almost three-quarters of young adults reported time missed
               from work because of their diabetes more than once per year



                                    17%                                                             About once a
                                                                         28%                        week or more /
                                                                                                    once every two
Young adults




                                                                                                    weeks / once a
                                                                                                    month

                                    37%
                                                                                                    Once every 2-3
                                                                                                    months / about
                                                                         44%                        twice a year




                                                                                                    Once a year or
                                    46%                                                             less

                                                                         29%


                                 ALL (1243)                             ITA (66)


                       Base: all young adults with diabetes who are working (excluding don’t know/not stated)


                                                 Q21 (YA): How often do you have to miss work because of your
                                                     diabetes?
     Diabetes management/ HCP Involvement (YA, PC)
4v
The majority of young adults currently saw their
diabetes nurse regularly for their diabetes


                                            ALL        ITA
                                          (1905)      (311)
           Diabetes nurse                  45%         82%
           Diabetes specialist             70%         22%
           GP/family doctor                27%         10%
           Dietician                       18%          9%
           Psychologist/counsellor          6%          5%
           Pharmacist                      21%          2%
           Ophthalmologist                 41%          1%




                  Base: all young adults with diabetes

                            Q22 (YA): Which of the following professionals do you currently see
                                regularly for your diabetes?
Most parents/carers said their child was currently
seeing a diabetes specialist for his/her diabetes


                                            ALL         ITA
                                          (4099)       (147)
           Diabetes specialist              87%        86%
           GP/family doctor                 29%        46%
           Diabetes nurse                   50%        37%
           Dietician                        34%        34%
           Psychologist/counsellor          11%        16%
           Pharmacist                       12%         9%
           Ophthalmologist                  32%         6%




                                                               Excludes country mentions < 6%
                       Base: all parents/carers


                               Q29 (PC): Which of the following professionals does your child
                                   currently see for his/her diabetes?
Young adults believed the diabetes specialist provided the
best support in helping to manage diabetes




                                              ALL             ITA
                                            (1261)            (50)
                   Diabetes specialist        53%             64%
                   Diabetes nurse             30%             20%
                   Psychologist/coun
                                               2%              8%
                   sellor
                   Dietician                   4%              4%
                   GP/family doctor            9%              2%
                   Gynaecologist                 -             2%




              Base: all young adults with diabetes who
              see several HCPs
                               Q23 (YA): Of the following professionals, which one provides you
                                   with the best support to help you manage your diabetes?
Parents agreed with young adults that the diabetes specialist
provided the best support in helping to manage their child’s
diabetes


                                                ALL         ITA
                                              (3115)        (93)
                   Diabetes specialist          57%         94%

                   Diabetes nurse               32%          2%

                   Psychologist/
                                                 2%          2%
                   counsellor
                   GP/family doctor              6%          1%

                   Pharmacist                    1%          1%




           Base: all parents/carers who see several HCPs



                                Q30 (PC): Of the following professionals, which one provides you
                                    and your child with the best support to help you manage
                                    his/her diabetes?
                GPs were not always available when needed for half of young adults
                and two-thirds of parents/carers
                                                                                                                     Always available
                                                                                                                     (5)
                                   41%
   Young adults


                                                                                    50%
                                                                                                                     Often available
                                                                                                                     (4)



                                                                                                                     Sometimes
                                   39%                                              25%                              available (3)



                                                                                                                     Rarely / never
                                   13%                                              21%                              available (1, 2)

                                    6%                                               4%
                                   ALL                                               IT A

 Mean rating:                       4.1                                              4.2
    Base:                          417                                               24
   Parents / Carers




                                                                                                                      Always available
                                                                                                                      (5)


                                  55%
                                                                                    67%                               Often available
                                                                                                                      (4)



                                                                                                                      Sometimes
                                                                                                                      available (3)

                                  32%
                                                                                    22%
                                                                                                                      Rarely / never
                                                                                                                      available (1,2)
                                   9%                                                7%
                                   3%                                                3%
                                   ALL                                               IT A
                                                                                                                   Scale: 1 (never
Mean rating:                       4.4                                               4.5                           available when
                                                                                                                   needed) to 5 (always
 Base:                            1136                                                 67                          available when
                         Base: all young adults with diabetes who see several HCPs including a GP/family doctor;
                                                                                                                   needed)
                         all parents/carers who see several HCPs including a GP/family doctor
                                                         Q24 (YA): At times when you need them, how available to you are
                                                              each of the following professionals? Q31 (PC): At times when
                                                              you need them, how available to you and your child are each of
                                                              the following professionals?
Just under one-fifth of HCPs reported that children/
adolescents see General Practitioners at least every 3 months


                                                                                               At least every 3
                            21%                                   18%                          months
 Healthcare Professionals




                                                                  13%                          Every 3-6
                            14%                                                                months

                            10%                                   14%
                                                                                               Every 6-12
                            8%                                    10%                          months


                                                                                               Once a year or
                                                                                               less often

                            48%                                  45%
                                                                                               Don't know/not
                                                                                               applicable



                            ALL                                   ITA
                            (666)                                 (78)

                                    Base: all healthcare professionals

                                                Q8 (HCP): In general, how frequently do the
                                                children/adolescents with diabetes under your care see the
                                                following professionals (including yourself) .. General
                                                Practitioner (GP)/Primary Care Physician (PCP)/Family
                                                Practitioner (FP)?
 Diabetes specialists were not always available when needed according to
 two-thirds of young adults, and three-quarters of parents/carers
                                                                                                                 Always available
                                                                                                                 (5)
                                39%
   Young adults



                                                                                70%                              Often available
                                                                                                                 (4)



                                33%                                                                              Sometimes
                                                                                                                 available (3)



                                19%                                             22%                              Rarely / never
                                                                                                                 available (1,2)

                                 8%                                              8%
                                ALL                                              IT A

 Mean rating:                   4.0                                              4.6
 Base:                          1052                                              37
   Parents / Carers




                                                                                                                Always available
                                                                                                                (5)


                               55%
                                                                                                                Often available
                                                                               78%                              (4)



                                                                                                                Sometimes
                                                                                                                available (3)
                               29%

                                                                                                                Rarely / never
                                                                               14%                              available (1,2)
                               12%
                                3%                                              6%
                                                                                1%
                                ALL                                              IT A
                                                                                                                 Scale: 1 (never
Mean rating:                     4.4                                             4.7                             available when
                                                                                                                 needed) to 5 (always
 Base:                          2876                                              93                             available when
                      Base: all young adults with diabetes who see several HCPs including a diabetes specialist; needed)
                      all parents/carers who see several HCPs including a diabetes specialist
                                                     Q24 (YA): At times when you need them, how available to you are
                                                          each of the following professionals? Q31 (PC): At times when
                                                          you need them, how available to you and your child are each of
                                                          the following professionals?
Three-quarters of HCPs stated that children/adolescents see a
Diabetes Specialist at least every 3 months


                                                                                               At least every 3
                                                                                               months
 Healthcare Professionals




                                                                                               Every 3-6
                            56%                                                                months
                                                                  73%
                                                                                               Every 6-12
                                                                                               months


                                                                                               Once a year or
                                                                                               less often
                            29%

                                                                  23%                          Don't know/not
                            7%                                                                 applicable
                            2%
                            6%                                    1%
                                                                  3%
                            ALL                                   ITA
                            (666)                                 (78)
                                    Base: all healthcare professionals


                                                Q8 (HCP): In general, how frequently do the
                                                children/adolescents with diabetes under your care see the
                                                following professionals (including yourself) .. Diabetes
                                                specialist?
                Diabetes nurses were not always available when needed according
   Young adults to more than half of young adults and two-thirds of parents/carers
                                                                                                                     Always available
                                                                                                                     (5)
                                   46%
                                                                                    55%
                                                                                                                     Often available
                                                                                                                     (4)



                                                                                                                     Sometimes
                                                                                                                     available (3)
                                   38%
                                                                                    32%
                                                                                                                     Rarely / never
                                                                                                                     available (1,2)
                                   12%                                              13%
                                    3%
                                   ALL                                               IT A

 Mean rating:                      4.3                                              4.4
 Base:                             640                                               31
   Parents / Carers




                                                                                                                      Always available
                                                                                                                      (5)

                                  54%
                                                                                    71%                               Often available
                                                                                                                      (4)



                                                                                                                      Sometimes
                                                                                                                      available (3)

                                  34%
                                                                                    11%
                                                                                                                      Rarely / never
                                                                                    11%                               available (1,2)
                                   9%                                                6%
                                   1%
                                   ALL                                                IT A                         Scale: 1 (never
Mean rating:                        4.4                                              4.5                           available when
                                                                                                                   needed) to 5 (always
           Base:                  1879                                               35                            available when
                         Base: all young adults with diabetes who see several HCPs including a diabetes nurse;     needed)
                         all parents/carers who see several HCPs including a diabetes nurse
                                                         Q24 (YA): At times when you need them, how available to you are
                                                              each of the following professionals? Q31 (PC): At times when
                                                              you need them, how available to you and your child are each of
                                                              the following professionals?
Two-thirds of HCPs said that children/adolescents see a
Diabetes Nurse at least every 3 months


                                                                                               At least every 3
                                                                                               months
 Healthcare Professionals




                            52%                                                                Every 3-6
                                                                                               months
                                                                  69%

                                                                                               Every 6-12
                                                                                               months


                            20%                                                                Once a year or
                                                                                               less often
                            9%
                                                                  23%
                            6%                                                                 Don't know/not
                                                                                               applicable
                            14%                                   4%
                                                                  4%
                            ALL                                   ITA
                            (666)                                 (78)

                                    Base: all healthcare professionals

                                                Q8 (HCP): In general, how frequently do the
                                                children/adolescents with diabetes under your care see the
                                                following professionals (including yourself) .. Diabetes
                                                nurse?
                Half of young adults and two-fifths of parents/ carers claimed
                dieticians were not always available when needed
                                                                                                                     Always available
                                   28%                                                                               (5)
   Young adults


                                                                                    50%
                                                                                                                     Often available
                                                                                                                     (4)

                                   44%
                                                                                                                     Sometimes
                                                                                                                     available (3)
                                                                                    38%

                                   20%                                                                               Rarely / never
                                                                                                                     available (1,2)

                                    7%                                              12%

                                   ALL                                               IT A

 Mean rating:                      3.9                                               4.4
 Base:                              342                                               26
   Parents / Carers




                                                                                                                    Always available
                                  33%                                              38%
                                                                                                                    (5)



                                                                                                                    Often available
                                                                                                                    (4)


                                  41%                                              34%
                                                                                                                    Sometimes
                                                                                                                    available (3)



                                                                                   18%                              Rarely / never
                                  19%                                                                               available (1,2)

                                   5%                                              10%
                                   ALL                                              IT A
                                                                                                                   Scale: 1 (never
Mean rating:                        4.0                                             4.0                            available when
                                                                                                                   needed) to 5 (always
           Base:                  1387                                              50                             available when
                         Base: all young adults with diabetes who see several HCPs including a dietician;          needed)
                         all parents/carers who see several HCPs including a dietician
                                                         Q24 (YA): At times when you need them, how available to you are
                                                              each of the following professionals? Q31 (PC): At times when
                                                              you need them, how available to you and your child are each of
                                                              the following professionals?
One tenth of HCPs said that children/adolescents see a
Dietician at least every three months


                            16%                                   12%                          At least every 3
                                                                                               months
 Healthcare Professionals




                                                                  21%
                                                                                               Every 3-6
                            23%                                                                months


                                                                                               Every 6-12
                                                                  29%                          months
                            24%

                                                                                               Once a year or
                                                                                               less often
                            21%                                   24%
                                                                                               Don't know/not
                                                                                               applicable
                            15%                                  14%

                            ALL                                   ITA
                            (666)                                 (78)

                                    Base: all healthcare professionals

                                                Q8 (HCP): In general, how frequently do the
                                                children/adolescents with diabetes under your care see the
                                                following professionals (including yourself) .. Dietician?
                Almost half of young adults and two-fifths of parents/ carers claimed
                psychologists/counsellors were not always available when needed
                                                                                                                     Always available
                                                                                                                     (5)
                                   40%
   Young adults


                                                                                    53%
                                                                                                                     Often available
                                                                                                                     (4)



                                   36%                                                                               Sometimes
                                                                                                                     available (3)

                                                                                    40%
                                                                                                                     Rarely / never
                                   17%                                                                               available (1,2)

                                    7%                                               7%
                                   ALL                                               IT A

 Mean rating:                      4.1                                               4.5
 Base:                              112                                                 15
   Parents / Carers




                                                                                                                    Always available
                                                                                                                    (5)
                                  37%
                                                                                   61%
                                                                                                                    Often available
                                                                                                                    (4)


                                  33%
                                                                                                                    Sometimes
                                                                                                                    available (3)

                                                                                   22%
                                  22%                                                                               Rarely / never
                                                                                                                    available (1,2)
                                                                                   17%
                                   6%
                                   ALL                                              IT A
                                                                                                                   Scale: 1 (never
Mean rating:                        4.0                                             4.4                            available when
                                                                                                                   needed) to 5 (always
           Base:                  465                                              23                              available when
                         Base: all young adults with diabetes who see several HCPs including a psychologist/       needed)
                         counsellor; all parents/carers who see several HCPs including a psychologist/counsellor
                                                         Q24 (YA): At times when you need them, how available to you are
                                                              each of the following professionals? Q31 (PC): At times when
                                                              you need them, how available to you and your child are each of
                                                              the following professionals?
A third of HCPs said children/adolescents saw a
psychologist/counsellor once a year or less often

                                                                  3%
                            8%                                                                 At least every 3
                            5%                                    12%                          months
 Healthcare Professionals




                            8%
                                                                  13%
                                                                                               Every 3-6
                                                                                               months

                            34%
                                                                  33%                          Every 6-12
                                                                                               months


                                                                                               Once a year or
                                                                                               less often

                            45%                                  40%                           Don't know/not
                                                                                               applicable



                            ALL                                   ITA
                            (666)                                 (78)

                                    Base: all healthcare professionals

                                                Q8 (HCP): In general, how frequently do the
                                                children/adolescents with diabetes under your care see the
                                                following professionals (including yourself) ..
                                                Psychologist/Counsellor?
                Three-fifths of young adults and one third of parents/carers found
                that pharmacists were not always available when needed
                                                                                                                     Always available
                                                                                                                     (5)
                                                                                    40%
   Young adults


                                   49%
                                                                                                                     Often available
                                                                                                                     (4)




                                                                                    40%                              Sometimes
                                                                                                                     available (3)
                                   34%

                                                                                                                     Rarely / never
                                                                                                                     available (1,2)
                                   13%                                              20%
                                    3%
                                   ALL                                               IT A

 Mean rating:                       4.3                                              4.2
 Base:                              394                                               5
   Parents / Carers




                                                                                                                    Always available
                                                                                                                    (5)
                                   43%
                                                                                   69%                              Often available
                                                                                                                    (4)



                                                                                                                    Sometimes
                                                                                                                    available (3)
                                   40%

                                                                                   23%                              Rarely / never
                                                                                                                    available (1, 2)
                                    8%
                                    3%                                              8%
                                    ALL                                             IT A
                                                                                                                   Scale: 1 (never
Mean rating:                        4.3                                             4.6                            available when
                                                                                                                   needed) to 5 (always
           Base:                    492                                             13                             available when
                         Base: all young adults with diabetes who see several HCPs including a pharmacist;         needed)
                         all parents/carers who see several HCPs including a pharmacist
                                                         Q24 (YA): At times when you need them, how available to you are
                                                              each of the following professionals? Q31 (PC): At times when
                                                              you need them, how available to you and your child are each of
                                                              the following professionals?
Most HCPs did not know the frequency with which
children/adolescents saw a Pharmacist over the course of a year


                             14%                                   10%                          At least every 3
                                                                                                months
                             5%                                    9%
  Healthcare Professionals




                             2%
                             6%                                    10%                          Every 3-6
                                                                                                months


                                                                                                Every 6-12
                                                                                                months


                             73%                                  70%                           Once a year or
                                                                                                less often


                                                                                                Don't know/not
                                                                                                applicable



                             ALL                                   ITA
                             (666)                                 (78)


                                     Base: all healthcare professionals

                                                 Q8 (HCP): In general, how frequently do the
                                                 children/adolescents with diabetes under your care see the
                                                 following professionals (including yourself) ..Pharmacist?
                The vast majority of young adults and parents/carers found that
                ophthalmologists were not always available when needed
                                                                                                                     Always available
                                   25%                                                                               (5)
   Young adults


                                                                                    67%                              Often available
                                                                                                                     (4)
                                   35%

                                                                                                                     Sometimes
                                                                                                                     available (3)

                                   27%
                                                                                    33%                              Rarely / never
                                                                                                                     available (1, 2)
                                   12%

                                   ALL                                               IT A

 Mean rating:                      3.7                                               3.7
 Base:                             785                                                 3

                                                                                   11%
   Parents / Carers




                                                                                                                    Always available
                                   26%                                                                              (5)



                                                                                   44%                              Often available
                                                                                                                    (4)
                                   33%

                                                                                                                    Sometimes
                                                                                                                    available (3)

                                                                                   33%
                                   24%
                                                                                                                    Rarely / never
                                                                                                                    available (1, 2)
                                    9%                                             11%

                                   ALL                                              IT A
                                                                                                                   Scale: 1 (never
Mean rating:                        3.8                                              3.4                           available when
                                                                                                                   needed) to 5 (always
           Base:                   1329                                               9                            available when
                         Base: all young adults with diabetes who see several HCPs including an ophthalmologist;   needed)
                         all parents/carers who see several HCPs including an ophthalmologist
                                                         Q24 (YA): At times when you need them, how available to you are
                                                              each of the following professionals? Q31 (PC): At times when
                                                              you need them, how available to you and your child are each of
                                                              the following professionals?
Just over half of HCPs noted that children/adolescents saw an
Ophthalmologist/eye specialist once a year or less

                            1%
                            2%                                    1%
                                                                                               At least every 3
                                                                  15%                          months
                            17%
 Healthcare Professionals




                                                                                               Every 3-6
                                                                                               months


                                                                  56%                          Every 6-12
                                                                                               months
                            63%

                                                                                               Once a year or
                                                                                               less often


                                                                                               Don't know/not
                                                                 27%                           applicable
                            18%

                            ALL                                   ITA
                            (666)                                 (78)


                                    Base: all healthcare professionals

                                                Q8 (HCP): In general, how frequently do the
                                                children/adolescents with diabetes under your care see the
                                                following professionals (including yourself)
                                                ..Ophthalmologist/eye specialist?
                    Ninety percent of young adults and parents/carers saw their preferred healthcare
                    professional all or most of the time

                                                                                                                       All the time (5)
                                                                                      30%
           Young adults


                                        40%


                                                                                                                       Most of the time
                                                                                                                       (4)


                                        37%                                           59%

                                                                                                                       Half the
                                                                                                                       time/sometimes /
                                                                                                                       never (1, 2, 3)
                                        18%
                                                                                       9%
                                        ALL                                            IT A

Mean rating:                             4.1                                            4.2
  Base:                                  1905                                           311
 Parents / Carers




                                                                                                                        All the time (5)


                                                                                      50%
                                       58%

                                                                                                                        Most of the time
                                                                                                                        (4)




                                                                                      40%
                                       29%                                                                              Half the time/
                                                                                                                        sometimes /
                                                                                                                        never (1, 2, 3)

                                       11%                                             9%
                                        ALL                                            IT A
                                                                                                                      Scale: 1 (never) to 5
Mean rating:                            4.4                                            4.3                            (all the time)
Base:                                  3886                                        139
                                     Base: all young adults with diabetes; all parents/carers who currently
                                     Accompany their child routinely to doctor for visits about diabetes
                                                          Q25 (YA): When you visit the doctor or another healthcare
                                                              professional in your diabetes team, how often is it the person
                                                              you prefer to see? Q33 (PC): When you see a doctor for your
                                                              child’s diabetes, how often is it the person you prefer to see?
               When they turned 18, the vast majority of young adults did
               not change the doctor who treated their diabetes




                                                                                                      No - still the
                            52%                                                                       same doctor
Young adults




                                                                       87%



                                                                                                      Yes - it's a
                            48%                                                                       different doctor



                                                                       13%

                         ALL (1673)                                  ITA (300)

                       Base: all young adults with diabetes (excludes don’t know)


                                                Q26 (YA): When you turned 18, did you change the doctor who
                                                    treats your diabetes?
                According to half of young adults (50%) and the majority of parents (87%), the doctor who
                treated them/their child when they were younger treated mostly children/adolescents

                                                                                                                  Mostly children /
                                                                                                                  adolescents
   Young adults


                                                                                 50%
                                   66%                                                                            Both children /
                                                                                                                  adolescents and
                                                                                                                  adults


                                                                                                                  Mostly adults


                                                                                 45%
                                   19%
                                                                                                                  Don't know
                                    8%
                                    7%                                            3%
                                                                                  3%
                                   ALL                                            IT A


Base:                              809                                              38



                                                                                                                  Mostly children /
   Parents / Carers




                                                                                                                  adolescents



                                                                                                                  Both children /
                                   78%                                                                            adolescents and
                                                                                 87%                              adults


                                                                                                                  Mostly adults




                                                                                                                  Don't know
                                   12%
                                    5%                                            6%
                                    5%                                            3%
                                                                                  3%
                                   ALL                                            IT A


Base:                              1505                                            31
                               Base: all young adults with diabetes whose doctor is different; all parents/carers whose
                               child’s doctor is different
                                                  Q27 (YA): Did the doctor who treated you when you were a
                                                      child/adolescent treat mostly children/adolescents, mostly
                                                      adults, or both? Q39 (PC): When your child was younger, did
                                                      his/her doctor treat mostly children/adolescents, mostly adults,
                                                      or both children/adolescents and adults?
              According to four-fifths of parents/carers their child’s current doctor treated mostly
              children/adolescents; according to half of young adults their current doctor treated both
              children/adolescents and adults
                                  5%                                            8%
                                                                                                                Mostly children /
 Young adults

                                                                                                                adolescents
                                  31%

                                                                               53%                              Both children /
                                                                                                                adolescents and
                                                                                                                adults


                                                                                                                Mostly adults
                                  56%

                                                                               37%                              Don't know


                                  9%                                            3%
                                  ALL                                           IT A

Base                              809                                           38


                                                                                                                 Mostly children /
 Parents / Carers




                                                                                                                 adolescents



                                  66%                                                                            Both children /
                                                                                                                 adolescents and
                                                                               81%                               adults


                                                                                                                 Mostly adults



                                  20%
                                                                                                                 Don't know
                                                                                6%
                                   9%                                          10%
                                   5%                                           3%
                                   ALL                                          IT A


Base:                             1505                                          31
                            Base: all young adults with diabetes whose doctor is different; all parents/carers whose
                            child’s doctor is different
                                                     Q29 (YA): Does the doctor(s) you mainly see now for your diabetes
                                                         treat mostly children/adolescents, mostly adults or both?
                                                     Q41 (PC): Does your child’s current doctor treating his/her diabetes
                                                         treat mostly children, both children and adults, or mostly
                                                         adults?
    Over a half of young adults believed the care they received
    from their current diabetes doctor was much or a little better
    than that offered by their previous diabetes doctor


                                                                                             Current care for
                                                                                             my diabetes
                                                                                             much / a little
                 43%                                                                         better

                                                                                             Current and
                                                             71%                             previous care for
                                                                                             my diabetes are
                                                                                             about the same

                                                                                             Previous care for
                 29%                                                                         my diabetes
                                                                                             much / a little
                                                                                             better


                 22%                                         18%                             Don't know


                                                              8%
                  6%                                          3%
                  ALL                                          ITA

Base:             809                                          38

               Base: all young adults with diabetes whose doctor is different
                                   Q30 (YA): How would you compare the care you receive now from
                                       your diabetes doctors to that you received from the diabetes
                                       doctors who treated you previously when you were
                                       child/adolescent?
   About half of parents/carers thought the care their child
   receives from his/her current diabetes doctor is much or a
   little better than that received from his/her previous doctor


                                                                                              Current doctor
                                                                                              much / a little
                                                                                              better
                  49%                                          52%
                                                                                              Current and past
                                                                                              doctors are
                                                                                              about the same


                                                                                              Past doctor
                                                               19%                            much / a little
                  30%                                                                         better

                                                               13%
                                                                                              Don't know
                  12%
                                                               16%
                   8%
                  ALL                                           ITA
Base:             1505                                            31
              Base: all parents/carers whose child’s doctor is different
                                   Q42 (PC): How would you compare the care your child receives now
                                       from his/her diabetes doctor to that he/she received from the
                                       doctors who treated him/her when she/he was younger?
More than half of young adults and two-thirds of parents/carers reported
that all the people involved in their/their child’s treatment talked to each
other about their/their child’s diabetes management
                                    % Who talk to each other
Young adults




                                                                                            56%
                                    44%




                                     ALL                                                     ITA
   Base:                            1261                                                      50
Parents / Carers




                                    64%                                                     65%




                                   ALL                                                     ITA
  Base:                           3115                                                      93
                   Base: all young adults with diabetes who see several HCPs; all parents/carers who see
                         several HCPs         Q31 (YA): As far as you know, do you think all the people who are now
                                                     involved in your treatment talk with each other about your diabetes
                                                     management, or does each of them work independently on your
                                                     case? Q34 (PC): As far as you know, do you think all the people who
                                                     are now involved in your child’s treatment/care talk with each other
                                                     about his/her diabetes management, or do you think that each of
                                                     them works independently on your child’s case?
             Almost three-fifths of parents/carers felt their child’s doctor/diabetes team
             understood the daily challenges their child and family faced very well, while
             over half of young adults agreed

                                                                                                              Understand
Young adults


                                                                                                              them very well
                               33%
                                                                             54%
                                                                                                              Understand
                                                                                                              them moderately
                                                                                                              well


                               41%                                                                            Do not
                                                                                                              understand them
                                                                                                              very well / at all
                                                                             38%
                                                                                                              Don't know/not
                               18%                                                                            stated

                                7%                                            7%
                                                                              2%
                            ALL (1905)                                     IT A (311)




                                                                                                               Understand
Parents / Carers




                                                                                                               them very well

                               47%
                                                                              59%                              Understand
                                                                                                               them moderately
                                                                                                               well


                                                                                                               Do not
                                                                                                               understand them
                               40%                                                                             very well / at all

                                                                              29%
                                                                                                               Don't know/not
                                                                                                               stated
                               10%                                            10%
                                3%                                             1%
                            ALL (4099)                                     IT A (147)


                         Base: all young adults with diabetes; all parents/carers
                                              Q32 (YA): How well does your doctor or professionals in your
                                                  diabetes team understand the daily challenges (difficulties) you
                                                  have, taking care of your diabetes? Q35 (PC): How well do
                                                  your child’s doctor and other professionals in your child’s
                                                  diabetes team understand the daily challenges and difficulties
                                                  you, your child and the rest of your family face, with respect to
                                                  taking care of your child’s diabetes?
             Two-thirds of parents/carers and over half of young adults have a lot
             of involvement in decisions about how to treat their/their child’s
             diabetes
Young adults



                                                    51%                                                      A lot
                                    54%                                56%
                     64%                                                                  67%




                                    46%             49%                44%                                   Somewhat / a
                     36%                                                                                     little / not at all
                                                                                          33%


                   ALL (1905)    IT A (311)      Aged 0-9 at     Aged 10-14 at       Aged 15+ at
                                                  dx (174)         dx (111)            dx (24)
Parents / Carers




                                                                                          43%                A lot

                                    68%                                66%
                     74%
                                                     85%



                                                                                          57%
                                                                                                             Somewhat / a
                                                                                                             little / not at all
                                    32%                                34%
                     25%
                                                     15%

                   ALL (4099)     IT A (147)    Child aged 0-       Child aged         Child aged
                                                    9 (52)          10-14 (65)          15+ (30)



                           Base: all young adults with diabetes; all parents/carers


                                                  Q33 (YA): How involved are you in decisions about how to treat
                                                      your diabetes?
                                                  Q37 (PC): How involved are you in decisions about how to treat
                                                      your child’s diabetes?
                One tenth of young adults and almost one third of parents/carers felt diabetes had a
                major or moderate positive impact on siblings
                                                                               11%
                                                                                                               A major /
                                   23%                                                                         moderate
                                                                                                               positive impact
   Young adults



                                                                                                               No impact


                                   45%
                                                                               80%
                                                                                                               A major /
                                                                                                               moderate
                                                                                                               negative impact
                                   15%
                                                                                                               Don't know / not
                                                                                                               stated
                                   19%
                                                                                6%
                                                                                3%
                                    ALL                                         IT A

Base:                              1678                                         221
Mean rating:                        3.2                                          3.1

                                                                                                                A major /
   Parents / Carers




                                    30%                                         30%                             moderate
                                                                                                                positive impact


                                                                                                                No impact

                                    25%
                                                                                34%
                                                                                                                A major /
                                                                                                                moderate
                                                                                                                negative impact
                                    37%
                                                                                27%                             Don't know / not
                                                                                                                stated

                                    9%                                           8%
                                    ALL                                          IT A                          Scale: 1 (major
Base:                               3302                                       95                              negative impact) to 5
                                                                                                               (major positive
Mean rating:                        2.9                                        3.1
                            Base: all young adults with diabetes who have siblings; all                        impact)
                            parents/carers whose child has siblings
                                                      Q34 (YA): What impact has your diabetes had on your
                                                          brother(s)/sister(s)?
                                                      Q49 (PC): What impact has your child’s diabetes had on his/her
                                                          brother(s)/sister(s)?
    Expense of managing diabetes/
4vi
       financial impact (YA, PC)
      All three groups thought it easy to obtain a glucose
      meter and supplies
                                                                                                             Young
                                                                                         3.9                 adults
                                           3.7                                                               Parents/
4 – Very easy                     3.6
                                                                               3.5                           Carers
                                                                                                             HCPs
                                                                    3.2
                         3.1




  1 – Very
  difficult                                                                                                Scale of 1 to 4,
                                                                                                           where 1=very
                                                                                                           difficult and
                                                                                                           4=very easy
                       (1905)    (4099)   (666)                    (311)     (147)      (78)
                                  ALL                                         ITA

              Base: all young adults with diabetes; all parents/carers; all healthcare professionals

                                                  Q35 (YA): How easy for you is it to obtain each of the following…?
                                                  Q50 (PC): How easy is it for you to obtain each of the following for
                                                       your child’s diabetes…?
                                                  Q21 (HCP): How easy is it for the children/adolescents with
                                                      diabetes (or their parents/carers) under your care to obtain
                                                       the following…?
      All three groups thought it easy to obtain a
      sufficient amount of insulin
                                                                                                                   Young
                                                                                                4                  adults
4 – Very easy
                                            3.8                                                                    Parents/
                                  3.7                                              3.7
                                                                                                                   Carers
                                                                        3.3                                        HCPs
                         3.1




  1 – Very
  difficult                                                                                                     Scale of 1 to 4,
                                                                                                                where 1=very
                                                                                                                difficult and
                                                                                                                4=very easy

                        (1905)   (4099)                                (311)       (147)        (78)
                                  ALL      (666)                                   ITA
              Base: all young adults with diabetes; all parents/carers; all healthcare professionals

                                                  Q35 (YA): How easy for you is it to obtain each of the following…?
                                                  Q50 (PC): How easy is it for you to obtain each of the following for
                                                       your child’s diabetes…?
                                                  Q21 (HCP): How easy is it for the children/adolescents with
                                                      diabetes (or their parents/carers) under your care to obtain
                                                       the following…?
     The three groups agreed it was easy to obtain the
     latest fast-acting or long-acting insulins available
                                                                                                                Young
                                                                                            3.9                 adults
4 – Very easy                                                                                                   Parents/
                                                                                  3.6                           Carers
                                   3.5
                                            3.4                                                                 HCPs
                                                                       3.2
                           3




  1 – Very
  difficult                                                                                                    Scale of 1 to 4,
                                                                                                               where 1=very
                                                                                                               difficult and
                                                                                                               4=very easy
                        (1905)   (4099)     (666)                      (311)      (147)
                                  ALL                                            ITA          (78)

              Base: all young adults with diabetes; all parents/carers; all healthcare professionals

                                                    Q35 (YA): How easy for you is it to obtain each of the following…?
                                                    Q50 (PC): How easy is it for you to obtain each of the following for
                                                         your child’s diabetes…?
                                                    Q21 (HCP): How easy is it for the children/adolescents with
                                                        diabetes (or their parents/carers) under your care to obtain
                                                         the following…?
   Unlike other medicines/devices for managing diabetes, insulin
   pumps were not as easy to obtain according to all three groups

                                                                                                       Young
                                                                                                       adults
4 – Very easy                                                                                          Parents/
                                                                                                       Carers
                                                                                                       HCPs
                                                                 3.1
                                                                           3.2       3.2

                               2.7
                                        2.6
                       2.5




    1 – Very
    difficult                                                                                           Scale of 1 to 4,
                                                                                                        where 1=very
                                                                                                        difficult and
                                                                                                        4=very easy
                     (1905) (4099)     (666)                     (311)     (147)     (78)
                              ALL                                          ITA

        Base: all young padults with diabetes; all parents/carers; all healthcare professionals


                                               Q35 (YA): How easy for you is it to obtain each of the following…?
                                               Q50 (PC): How easy is it for you to obtain each of the following for
                                                    your child’s diabetes…?
                                               Q21 (HCP): How easy is it for the children/adolescents with
                                                   diabetes (or their parents/carers) under your care to obtain
                                                    the following…?
   There was consensus amongst the three groups
   that it was easy to obtain insulin pens
                                                                                                      Young
                                                                                      4               adults
4 – Very easy                                                                                         Parents/
                                3.5     3.5                                3.5                        Carers
                                                                                                      HCPs
                                                                 3.2
                       3.1




    1 – Very
    difficult

                                                                                                      Scale of 1 to 4,
                                                                                                      where 1=very
                             (4099)                                       (147)
                                                                  (311) ITA                           difficult and
                   (1905)       ALL    (666)                                              (78)        4=very easy

        Base: all young adults with diabetes; all parents/carers; all healthcare professionals

                                               Q35 (YA): How easy for you is it to obtain each of the following…?
                                               Q50 (PC): How easy is it for you to obtain each of the following for
                                                    your child’s diabetes…?
                                               Q21 (HCP): How easy is it for the children/adolescents with
                                                   diabetes (or their parents/carers) under your care to obtain
                                                    the following…?
             Nearly a fifth of young adults and a third of parents/carers
             had found their/their child’s diabetes had caused a
             moderate/major impact in terms of financial burden
                                                                        18%
                                                                                                        Major / moderate
Young adults



                                                                                                        burden
                            47%


                                                                                                        Minor / no
                                                                                                        burden
                                                                        75%

                            48%
                                                                                                        Don't know



                            5%                                           8%
                        ALL (1905)                                    IT A (311)
Parents / Carers




                                                                         33%                             Major / moderate
                                                                                                         burden
                            50%


                                                                                                         Minor / no
                                                                                                         burden


                                                                         66%
                            48%
                                                                                                         Don't know




                             1%                                           1%
                         ALL (4099)                                   IT A (147)


                       Base: all young adults with diabetes; all parents/carers


                                              Q37 (YA): How much of a financial burden has your diabetes been
                                                  for your family (parent(s)/guardian(s))?
                                              Q44 (PC): How much of a financial burden has your child’s diabetes
                                                  been for your family?
             About one fifth of young adults and one quarter of
             parents/carers claimed their family financial situation had
             limited ability to care for their/their child’s diabetes
                                                                        16%
                                                                                                         A lot / somewhat
Young adults



                           42%                                                                           / a little




                                                                                                         Not at all
                                                                        72%
                           45%

                                                                                                         Don't know / not
                                                                                                         applicable

                           13%                                          11%

                         ALL (1905)                                   IT A (147)
Parents / Carers




                           33%                                           27%                              A lot / somewhat
                                                                                                          / a little




                                                                                                          Not at all



                           66%                                           72%

                                                                                                          Don't know




                            2%                                            1%
                         ALL (4099)                                   IT A (147)



                        Base: all young adults with diabetes; all parents/carers

                                              Q38 (YA): How much has your (or your family’s) financial situation
                                                  limited your ability to take care of your diabetes?
                                              Q46 (PC): To what extent has your financial situation limited your
                                                  ability to take care of your child’s diabetes?
       Education/school issues
4vii
              (YA, PC)
School friends and teachers were the two groups at school
that young adults were most likely to inform that they had
diabetes

                                              ALL             ITA
                                            (1637)           (309)
                 School friends               76%             87%
                 Class teacher                54%             78%
                 Other teachers               57%             73%
                 Office staff                 16%             34%
                 School/head teacher          27%             18%
                 Other                        11%             10%
                 Canteen staff/ staff
                                               9%              6%
                 who prepared food
                 School nurse/
                                              14%              2%
                 health worker
                 No one                        6%              2%
                 DK/can’t remember             9%              7%


         Base: all young adults with diabetes who are in/were in secondary education
                                  Q46 (YA): At school, who knows (who knew when you were in
                                      secondary school) you had diabetes?
           More than two-thirds of young adults reported that all or
           most of their school friends knew they had diabetes




                                                                                                     All / most
 Young adults




                         71%                                        69%
                                                                                                     Some / few




                                                                                                     None




                         24%                                        31%                              Don't know

                          3%
                          2%
                          ALL                                        ITA

Base:                     484                                         38


                       Base: all young adults with diabetes who are in secondary school

                                           Q48 (YA): How many of your school friends know you have
                                               diabetes?
            The majority of young adults said their teachers do/did not
            treat them better than others because of their diabetes


                          1%
                                                                                                     All the time (5)
                          22%
                                                                     34%
  Young adults




                                                                                                     Most / half the
                                                                                                     time / sometimes
                                                                                                     (4,3,2)


                          65%                                                                        Never (1)
                                                                     61%

                                                                                                     Don't know


                          12%
                                                                      5%
                          ALL                                         ITA                           Scale: 1
Mean:                     1.4                                         1.5                           (never) to 5 (all
                                                                                                    the time)
Base:                     1637                                       309

                            Base: all young adults with diabetes who are/did go to secondary education

                                          Q49 (YA): How often do/did your teachers (used to) treat you
                                              better than others (back in secondary school) because of your
                                              diabetes?
            The vast majority of young adults said their teachers do/did
            not treat them less well than others because of their diabetes



                           1%                                           1%
                                                                        4%
                          10%                                                                          All the time (5)
  Young adults




                                                                                                       Most / half the
                                                                                                       time / sometimes
                                                                                                       (4,3,2)
                          76%                                          91%
                                                                                                       Never (1)




                                                                                                       Don't know


                          12%
                                                                        4%
                          ALL                                           ITA                            Scale: 1
Mean:                     1.2                                           1.1                            (never) to 5 (all
                                                                                                       the time)
Base:                    1637                                           309
                                Base: all young adults with diabetes who are/did go to secondary education
                                            Q50 (YA): How often do/did your teachers (used to) treat you less
                                                well than others (back in secondary school) because of your
                                                diabetes?
            The majority of young adults claimed their friends did not
            treat them better than others because of their diabetes



                           1%                                            1%
                                                                                                        All the time (5)
                           22%                                          24%
  Young adults




                                                                                                        Most / half the
                                                                                                        time / sometimes
                                                                                                        (4,3,2)


                           66%                                                                          Never (1)
                                                                        73%


                                                                                                        Don't know


                           11%
                                                                         2%
                           ALL                                           ITA                           Scale: 1
Mean:                      1.4                                           1.3                           (never) to 5 (all
                                                                                                       the time)
Base:                      1637                                          309
                       Base: all young adults with diabetes whose doctor is different
                                             Q51 (YA): How often do/did your friends (used to) treat you better
                                                 than others (back in secondary school) because of your
                                                 diabetes?
            The majority of young adults claimed their friends did not
            treat them less well than others because of their diabetes



                           1%                                         11%
                          14%                                                                          All the time (5)
  Young adults




                                                                                                       Most / half the
                                                                                                       time / sometimes
                                                                                                       (4,3,2)

                          73%                                         86%                              Never (1)




                                                                                                       Don't know


                          11%
                                                                       2%
                          ALL                                          ITA                            Scale: 1
Mean:                     1.3                                          1.1                            (never) to 5 (all
                                                                                                      the time)
Base:                    1637                                          309
                          Base: all young adults with diabetes whose doctor is different
                                          Q52 (YA): How often do/did your friends (used to) treat you less
                                              well than others (back in secondary school) because of your
                                              diabetes?
Young adults thought teachers who were better informed on
how to deal with emergency diabetes situations would
benefit young adults with diabetes at school
                                                   ALL          ITA
                                                 (1905)        (311)
             Teachers who are better
             informed on how to deal with
             an emergency diabetes
                                                   68%          65%
             situation
             A school nurse on site                33%          38%
             Teachers who are better
             informed about diabetes
                                                   58%          32%
             Glucagon made readily
             available at school as well as
             someone properly trained to
                                                   45%          28%
             administer it
             Healthy food and drink options        55%          27%
             Juices and glucose sources
             made readily available
                                                   43%          26%
             School friends who are better
             informed about diabetes
                                                   35%          24%
             Nutritional information about
             food served at school
                                                   43%          17%


                      Base: all young adults with diabetes          Excludes overall mentions <6%

                               Q54 (YA): What type of additional help do you think schools should
                                   be able to provide for young adults with diabetes?
The majority of parents/carers thought better informed teachers (in
terms of managing emergency situations and diabetes in general)
would benefit young adults with diabetes at school
                                                   ALL         ITA
                                                 (4099)       (147)
                Teachers who are better
                informed on how to deal
                with an emergency diabetes
                                                   75%         80%
                situation
                Teachers who are better
                informed about diabetes
                                                   73%         65%
                Glucagon made readily
                available at school as well
                as someone properly trained
                                                   53%         47%
                to administer it
                Juices and glucose sources
                made readily available
                                                   43%         37%
                Healthy food and drink
                options
                                                   52%         35%
                School friends who are
                better informed about              37%         33%
                diabetes
                A school nurse on site             37%         29%
                Nutritional information
                about food served at school
                                                   45%         28%

                                                             Excludes country mentions of 1%
                                         Base: all parents/carers
                               Q27 (PC): What type of additional help do you think schools should
                                   be able to provide for young adults with diabetes who are
                                   around the same age as your child?
 One quarter of parents/carers and one eighth of young adults said that
 their child’s/their diabetes had a major or moderate impact on their
 performance at school
                                                                 13%
  Young adults



                     31%


                                                                 39%                         Major/mode
                                                                                             rate impact

                     43%                                                                     Minor
                                                                                             impact

                                                                                             No impact
                                                                 47%
                     23%                                                                     Don't
                                                                                             know/not
                      4%                                                                     stated

                      ALL                                         ITA

Base:                 484                                         38
  Parents / Carers




                                                                 24%
                      39%

                                                                                            Major/mode
                                                                 29%
                                                                                            rate impact

                      28%                                                                   Minor
                                                                                            impact

                                                                                            No impact
                                                                 40%
                      27%
                                                                                            Don't
                                                                                            know/not
                      5%                                         7%                         stated
                      ALL                                        ITA




Base:                 3299                                       126
                     Base: All parents/carers whose child receives education at school; all
                     young adults with diabetes who are still currently in secondary school
                                            Q24 (PC): How much of an impact do you think your
                                            child’s diabetes has on his/her performance at school?
                                            Q44 (YA): How much impact does your diabetes have on
                                            your performance at school?
Two-thirds of young adults had missed out on school activities some or
half the time because of their diabetes; almost half of parents/ carers
confirmed this finding
                    7%                  9%                11%                10%
                                                                                                                All/most of
 Young adults


                                                                                                                the time
                                                                                                                (4,5)
                    40%                                                                          58%
                                                                                                                Half the
                                       71%                                                                      time/someti
                                                          71%                75%
                                                                                                                mes (2, 3)

                                                                                                                Never (1)
                    47%
                                                                                                 42%

                                       18%                17%               15%                                 Don't
                    6%                                                                                          know/not
                                        1%                1%                 1%                                 stated
                    ALL                 ITA          aged 0-9 at dx    aged 10-14 at dx    aged 15+ at dx


Mean rating:        1.8                 2.2                 2.3                2.3                1.7             Scale: 1 (never) to
                                                                                                                  5 (all of the time)
Base:               1637               309                  173                110                  24

                                                           3%                                      4%
 Parents / Carers




                     7%                 4%                                     6%
                                                                                                                 Most of the
                                                                                                                 time/half
                                                                                                                 the time
                    37%                                                       40%                                (4,5)
                                        47%               58%                                     50%            Half the
                                                                                                                 time/Someti
                                                                                                                 mes (2, 3)

                                                                                                                 Never (1)


                    54%                                                       53%
                                        45%               32%                                     46%            Don't
                                                                                                                 know/not
                                                                                                                 stated
                                                           8%
                     2%                 2%
                     ALL                ITA          Child aged 0-9    Child aged 10-14     Child aged 15+

Mean rating:        1.7                 1.7                 1.9                1.7                  1.6
Base:               3299                126                  38                62                    26
                           Base: all parents/carers whose child receives education at school; all young adults
                           with diabetes who are/did go to secondary school
                                                     Q45 (YA): How often does/did your diabetes prevent you
                                                     from participating in school activities? Q25 (PC): How often
                                                     does your child’s diabetes prevent him/her from participating
                                                     in school activities (such as outings, sport activities etc…)?
School friends and class teachers were the two groups at
school that young adults were most likely to rely on if they
required help managing their diabetes at school



                                               ALL        ITA
                                              (484)       (38)
                   School friends              58%        42%
                   Class teachers              21%        34%
                   Other teacher               26%        11%
                   School nurse/
                                               12%         3%
                   health worker
                   Office staff                4%          3%
                   No one                      16%        18%
                   DK/Can’t remember           12%        24%




         Base: all young adults with diabetes who are in/were in secondary education
                                      Q47 (YA): If you need help with managing your diabetes
                                      at school, who would be able to help you?
Class teachers were the group at school that the majority of
parents/carers thought their children were most likely to rely
on if they required help managing their diabetes at school

                                              ALL          ITA
                                            (3299)        (126)
                 Class teachers               57%          67%
                 School friends               38%          35%
                 Other teacher                32%          31%
                 School teacher/
                                              20%          10%
                 Head teacher
                 Canteen staff/staff
                                               7%           7%
                 who prepare food
                 School nurse/
                                              28%           6%
                 health worker
                 Office staff                 12%           6%
                 No one                        8%          10%
                 DK/Can’t remember             3%           4%
                                                                       Excludes country mentions <4%

          Base: all parents/carers with children in school receiving education
                                         Q26 (PC): Do you know who your child can rely on when
                                         requiring help to manage his/her diabetes at school?
The home room teacher was the person that HCPs felt
children/adolescents were most likely to rely on if they
required help managing their diabetes at school

                                            ALL         ITA
                                           (666)        (78)
        Home room teacher                    75%        63%
        School friends                       49%        32%
        School nurse/ health worker          33%        29%
        Other teachers                       30%        18%
        School principal/Vice-principal      19%        19%
        Cafeteria staff/staff who
                                             15%        15%
        prepare food
        Bus driver                           6%          4%
        Office staff                         13%         3%
        Other                                12%        14%
        No one                               4%          8%
        DK/Can’t remember                    7%          4%

                         Base: all healthcare professionals
                                    Q20 (HCP): To your knowledge, who can the children and
                                    adolescents with diabetes you see rely on when requiring
                                    help to manage their diabetes at school?
Three-quarters of young people missed school due to diabetes
more than once a year



                 21%                                     17%                           Once a month /
                                                                                       once every two
                                                                                       weeks / about
                                                                                       once a week or
                                                                                       more
  Young people




                                                                                       Twice a year /
                 45%                                     58%                           once every 2-3
                                                                                       months




                                                                                       Once a year or
                                                                                       less
                 35%
                                                         26%


                 ALL                                      ITA
Base:            484                                     35

                 Base: all young people with diabetes who are still attending secondary
                 school (excluding don’t know/not stated)
                                         Q53 (YP): How often do you have to miss school because
                                         of your diabetes?
 Almost half of parents/carers said their child sometimes had to
 miss school because of their diabetes


                           3%                                      1%
                                                                                                All / most / half
                                                                                                the time (3,4 or 5)

                                                                  47%
   Parents / Carers




                          52%
                                                                                                Sometimes (2)




                                                                                                Never (1)


                                                                  51%
                          45%
                                                                                                Don't know



                           1%                                      1%
                           ALL                                     ITA
Mean rating:               1.6                                     1.5                           Scale: 1 (never) to 5
Base:                     3132                                    102                            (all of the time)

                      Base: all parents/carers whose child receives education in a non-boarding
                      school
                                              Q28 (PC): How often does your child have to miss school,
                                              because of his/her diabetes?
        Support from family, friends, school, community
                     in managing diabetes
4viii
                           (YA, PC)
    Young adults believed their parents/guardians were very
    supportive in terms of their diabetes

                                                                                      Mean scores
  4 – very
  supportive                                                 3.7
                     3.5




                                                                                        Scale: 1 (not at all
1 – not at all                                                                          supportive) to 4
supportive                                                                              (very supportive)




                  ALL (1905)                             ITA (311)

                      Base: all young adults with diabetes



                                Q55 (YA): How supportive of your diabetes do you consider the
                                    following people to be?
    Young adults judged their spouses/partners to be very
    supportive in terms of their diabetes

                                                                                      Mean scores
  4 – very
  supportive                                                 3.6
                     3.5




                                                                                        Scale: 1 (not at all
1 – not at all                                                                          supportive) to 4
supportive                                                                              (very supportive)




                  ALL (1905)                             ITA (311)


                       Base: all young adults with diabetes



                                Q55 (YA): How supportive of your diabetes do you consider the
                                    following people to be?
    Overall, young adults thought their siblings were
    supportive of their diabetes
                                                                                    Mean scores
  4 – very
  supportive
                                                           3.5
                  3.1




                                                                                      Scale: 1 (not at all
1 – not at all                                                                        supportive) to 4
supportive                                                                            (very supportive)




                  ALL                                      ITA

        Base:     1678                                     221

                    Base: all young adults with diabetes who have siblings

                              Q55 (YA): How supportive of your diabetes do you consider the
                                  following people to be?
    In comparison, young adults did not consider their schools to
    be as supportive about their diabetes as their families

                                                                                       Mean scores
  4 – very
  supportive




                     2.3                                      2.3



                                                                                         Scale: 1 (not at all
1 – not at all                                                                           supportive) to 4
supportive                                                                               (very supportive)




                     ALL                                      ITA

        Base:         484                                     38

                       Base: all young adults with diabetes who are in secondary school

                                 Q55 (YA): How supportive of your diabetes do you consider the
                                     following people to be?
    Classmates were considered more supportive than schools by
    young adults regarding their diabetes, but less supportive
    than families
                                                                                      Mean scores
  4 – very
  supportive



                    2.7                                      2.8




                                                                                        Scale: 1 (not at all
1 – not at all                                                                          supportive) to 4
supportive                                                                              (very supportive)




                    ALL                                      ITA

        Base:        484                                     38

                      Base: all young adults with diabetes who are in secondary school

                                Q55 (YA): How supportive of your diabetes do you consider the
                                    following people to be?
    Young adults found their friends, in general, to be supportive
    of their diabetes

                                                                                                Mean scores
  4 – very
                                                                                   3.7
  supportive                                                      3.5
                                3.4              3.4
                    3.1




                                                                                                  Scale: 1 (not at all
1 – not at all                                                                                    supportive) to 4
supportive                                                                                        (very supportive)



                 ALL (1905)   ITA (311)     Aged 0-9 at       Aged 10-14      Aged 15+ at
                                             dx (174)         at dx (111)       dx (24)


                               Base: all young adults with diabetes



                                          Q55 (YA): How supportive of your diabetes do you consider the
                                              following people to be?
    Young adults considered local communities to be fairly
    supportive about their diabetes, but less supportive than
    families
                                                                                                Mean scores
  4 – very
  supportive

                                                                                   2.9

                    2.4         2.5              2.5              2.5




                                                                                                  Scale: 1 (not at all
1 – not at all                                                                                    supportive) to 4
supportive                                                                                        (very supportive)



                 ALL (1905)   ITA (311)     Aged 0-9 at       Aged 10-14      Aged 15+ at
                                             dx (174)         at dx (111)       dx (24)

                               Base: all young adults with diabetes



                                          Q55 (YA): How supportive of your diabetes do you consider the
                                              following people to be?
    Young adults rated society in general as less supportive about
    their diabetes than other groups such as family and friends

                                                                                                Mean scores
  4 – very
  supportive


                                                                                   2.7
                    2.3         2.3              2.3              2.3




                                                                                                  Scale: 1 (not at all
1 – not at all                                                                                    supportive) to 4
supportive                                                                                        (very supportive)



                 ALL (1905)   ITA (311)     Aged 0-9 at       Aged 10-14      Aged 15+ at
                                             dx (174)         at dx (111)       dx (24)


                               Base: all young adults with diabetes



                                          Q55 (YA): How supportive of your diabetes do you consider the
                                              following people to be?
      Value of/opinions on diabetes-related
4ix
                activities (YA/PC)
Only one fifth of young adults had not been
involved in diabetes-related youth activities
                                                        Aged 0-          Aged             Aged
                               ALL        ITA
                                                        9 at dx        10-14 at          15+ at
                             (1905)      (311)
                                                         (174)         dx (111)          dx (24)
   A youth camp
   specifically for
   children/young adults
                              44%         77%             82%              76%               42%
   with diabetes
   Internet chat groups
   networks and activities    30%         18%             18%              20%               13%
   for youth with diabetes
   Local events activities
   and networks for young     24%         14%             12%              16%               17%
   adults with diabetes
   A youth camp for
   families with diabetes
   (both parents and
                              10%          6%              7%               5%               4%
   children)
   Percent who had not
   been involved in any of    30%         18%             16%              15%               50%
   the above

                                Base: all young adults with diabetes

                                      Q56 (YA): Which of the following activities have you
                                          been involved in…?
One third of parents/carers had not been involved
in diabetes-related activities
                                                                      Child          Child
                                                       Child
                               ALL       ITA                          aged           aged
                                                      aged 0-
                             (4099)     (147)                         10-14          15+
                                                      9 (52)
                                                                       (65)          (30)
   Local events activities
   and networks for young     44%         50%           48%            48%            57%
   adults with diabetes
   A youth camp
   specifically for
   children/young adults
                              25%         31%           25%            37%            27%
   with diabetes
   Internet chap groups
   networks and activities    29%         16%           12%            15%            27%
   for youth with diabetes
   A youth camp for
   families with diabetes
   (both parents and
                              17%         16%           19%            12%            20%
   children)
   Percent who had not
   been involved in any of    30%         34%           40%            31%            30%
   the above
                                      Base: all parents/carers

                                        Q52 (PC): Which of the following activities have you been
                                            involved in…?
    Young adults and parents/ carers felt youth camps
    for children with diabetes had been very helpful
                                                                                              Mean scores
  4 – a great                                                         3.8
  deal            3.4
                               3.5
                                                          3.4




                                                                                              Young
                                                                                              adults
                                                                                              Parents /
                                                                                              carers



1 – not at all



                        ALL                                     ITA
                                                                                               Scale: 1 (not at all)
     Base (YA):         838                                     239                            to 4 (a great deal)
     Base (PC):         1045                                    45

                         Base: all young adults with diabetes who are involved in this
                         activity; all parents/carers who are involved in this activity
                                     Q57 (YA): To what extent has this activity helped you?
                                     Q53 (PC): To what extent has this activity helped you?
    Young adults and parents/ carers felt youth camps for
    families of children with diabetes had been very helpful

                                                                                              Mean scores
  4 – a great                                                         3.8
  deal                        3.5                         3.5
                  3.2




                                                                                              Young
                                                                                              adults
                                                                                              Parents /
                                                                                              carers


1 – not at all



                        ALL                                     ITA
                                                                                               Scale: 1 (not at all)
     Base (YA):         189                                     20                             to 4 (a great deal)
     Base (PC):         694                                     24

                          Base: all young adults with diabetes who are involved in this
                          activity; all parents/carers who are involved in this activity
                                     Q57 (YA): To what extent has this activity helped you?
                                     Q53 (PC): To what extent has this activity helped you?
    Internet chat groups were also judged to be helpful
    by both young adults and parents/carers
                                                                                              Mean scores
  4 – a great                                                3.7
  deal
                               3.3                                       3.3
                  3.2




                                                                                                  Young
                                                                                                  adults
                                                                                                  Parents /
                                                                                                  carers


1 – not at all



                        ALL                                        ITA
                                                                                               Scale: 1 (not at all)
     Base (YA):         580                                        56
                                                                                               to 4 (a great deal)
     Base (PC):         1187                                       24

                         Base: all young adults with diabetes who are involved in this
                         activity; all parents/carers who are involved in this activity
                                     Q57 (YA): To what extent has this activity helped you?
                                     Q53 (PC): To what extent has this activity helped you?
    Overall young adults and parents/carers claimed
    local activities had been helpful
                                                                                              Mean scores
  4 – a great
  deal
                                                           3.4         3.4
                               3.2
                  3.1




                                                                                               Young
                                                                                               adults
                                                                                               Parents /
                                                                                               carers


1 – not at all




                        ALL                                      ITA
     Base (YA):         459                                       43
                                                                                               Scale: 1 (not at all)
     Base (PC):         1794                                     73                            to 4 (a great deal)
                         Base: all young adults with diabetes who are involved in this
                         activity; all parents/carers who are involved in this activity
                                     Q57 (YA): To what extent has this activity helped you?
                                     Q53 (PC): To what extent has this activity helped you?
About one seventh of young adults and one fifth of
parents/carers were actively involved in organising activities
around diabetes in their communities

                      % saying Yes                                  Young adults

                                                                    Parents /
                                                                    carers




                           22%
              19%                                                    20%

                                                       14%




                    ALL                                       ITA
Base (YA):          1905                                      311
Base (PC):          4099                                       147
              Base: all young adults with diabetes; all parents/carers
                                 Q58 (YA): Are you actively involved in organising activities around
                                     diabetes in your community?
                                 Q54 (PC): Are you actively involved in organising activities around
                                     diabetes in your community?
             One quarter of young adults not currently involved
             would be interested in getting involved in
             organising activities around diabetes


                                                                   28%                                 Very / fairly
  Young adults




                                                                                                       interested
                        46%


                                                                                                       Not very / not at
                                                                                                       all interested

                                                                   69%
                        44%
                                                                                                       Don't know / not
                                                                                                       sure

                        8%                                          3%
                        ALL                                         ITA
Base:                   1544                                        268

                          Base: all young adults with diabetes who are not involved in organising
                          activities around diabetes
                                        Q59 (YA): How interested would you be in getting involved in
                                            organizing activities around diabetes in your community?
     Information sources on diabetes
4x
                (YA, PC)
The diabetes medical team was the most frequently named
sources of information about diabetes for young adults
                                             ALL          ITA
                                           (1905)        (311)
        Diabetes medical team                66%          92%
        Other people with diabetes           36%          48%
        Special diabetes internet
        websites
                                             52%          45%
        Libraries/books                      17%          26%
        Diabetes associations                47%          23%
        Family                               25%          15%
        General diabetes meetings            12%           8%
        General internet websites            32%           7%
        Television/radio                     21%           7%
        Specialist diabetes
        classes/training courses
                                             14%           7%
        Diabetes camps                       15%           6%
        Friends                              12%           5%

                                                                    Excludes country answers less than 5%
                                       Base: all young adults with diabetes
                                     Q60 (YA): Where do you get your information about diabetes
                                         nowadays?
Diabetes specialists, diabetes internet websites and diabetes
associations were the three top information sources on
diabetes for parents/carers
                                                ALL      ITA
                                              (4099)    (147)

                    Diabetologists/diabetes
                                               75%      80%
                    specialists

                    Specialist diabetes
                                               58%      64%
                    internet websites

                    Diabetes associations      56%      59%

                    Other parents of people
                                               39%      44%
                    with diabetes

                    Diabetes associations
                                               45%      43%
                    websites

                    Diabetes nurse             47%      34%

                    Other people with
                                               24%      28%
                    diabetes

                    Dietician                  27%      23%

                    Diabetes camps             16%      22%

                    Television/radio           23%      20%

                    Libraries/books            22%      16%

                    General diabetes
                                               16%      16%
                    meetings

                    GP/family doctor           20%      15%

                    General internet
                                               27%      14%
                    websites
                                                  Excludes country answers less than 14%
                                 Base: all parents/carers
                                Q55 (PC): Where do you get your information about diabetes
                                    nowadays?
       Areas for improvement
4xi
      in diabetes care (YA, PC)
Two top areas for improvement identified by young adults
pertained to easier monitoring of blood sugars and improved
public knowledge of diabetes
                                                                       ALL        ITA
                                                                     (1905)      (311)
       Better/easier ways to monitor blood sugars                     34%         59%

       Improved public awareness and knowledge of diabetes            46%         47%

       Better educational materials for young adults with
                                                                      14%         31%
       diabetes
       Better/more convenient treatment methods                       30%         28%
       Easier access to nutritional information                       16%         28%

       Easier availability of better types of food                    21%         27%

       Better understanding of personal needs from HCPs               14%         17%

       Better financial diabetes support from insurance or
                                                                      44%         15%
       government
       More diabetes-related activities/ initiatives/ diabetes
                                                                      13%         9%
       associations
       More education for my parents and family                        7%         8%

       Less discrimination due to diabetes                            12%         6%

       Less impact on choice of career                                13%         5%

       Easier access to diabetes medicines                            15%         4%

       Activities about diabetes at school                             8%         4%


                      Base: all young adults with diabetes
                                             Q61 (YA): Which of the following areas would you most like to see
                                                 improvements? Please choose up to 3 items where you would
                                                 most like to see a change.
Similar to young adults, the two key areas for improvement selected
by parents/carers pertained to public awareness/knowledge of
diabetes and easier blood sugar monitoring
                                                             ALL         ITA
                                                           (4099)       (147)
           Improved public awareness and
                                                             55%         64%
           knowledge of diabetes
           Better/easier ways to monitor blood
                                                             52%         59%
           sugars
           Better information/ training for people
                                                             16%         28%
           with diabetes
           Better/more convenient treatment
                                                             44%         27%
           methods
           More diabetes-related activities/
                                                             15%         25%
           initiatives/ diabetes associations
           Better financial diabetes support from
                                                             40%         21%
           insurance or government
           Less discrimination due to diabetes               18%         18%

           Easier availability of better types of food       16%         12%

           Less impact on choice of career                   13%         10%
           Easier access to nutritional information          15%         7%
           Easier access to diabetes medicines                9%         6%


                              Base: all parents/carers
                                      Q56 (PC): Which of the following areas would you most like to see
                                          improvements which could help you and your child better
                                          manage his/her diabetes? Please choose up to 3 items where
                                          you would most like to see a change.
        Perceptions of living with
4xii
       diabetes in future (YA, PC)
Optimism was expressed by both young adults and
parents/carers with regard to living with their/their child’s
diabetes in future

5 – very
optimistic


                                                                                 3.73.7
                3.53.6        3.4 3.4                          3.4 3.4
                                              3.33.3
                                                                                                   Young adults

                                                                                                   Parents /
                                                                                                   carers

                                                                                                  Scale: 1 (very
                                                                                                  pessimistic) to 5
1 – very                                                                                          (very optimistic)
pessimistic



                 ALL            ITA         Age 0-9         Age 10-14      Age 15+
              (1905)(4099)   (311) (147)    (52) (174)        (65) (111)               Age of diabetes child/
                                                                             (30) (24)
                                                                                       Age of young adult at
                                                                                       diagnosis
                      Base: all young adults with diabetes; all parents/carers


                                        Q62 (YA): Using a scale of 5-1, where 5 means very optimistic and
                                            1 means very pessimistic, how optimistic are you about your
                                            future in terms of…? Q57 (PC): Using a scale of 5-1, where 5
                                            means very optimistic and 1 means very pessimistic, how
                                            optimistic are you about your child’s future in terms of…?
Overall, a similar level of optimism to that evident for living
with diabetes in general was expressed by both groups
regarding future work/work prospects

5 – very
optimistic


                3.7
                          3.5                          3.5          3.5
                                                                                         Young adults

                                                                                         Parents /
                                                                                         carers




1 – very
pessimistic


              (1905)    (4099)                         (311)         (147)                 Scale: 1 (very
                    ALL                                    ITA
                                                                                           pessimistic) to 5
                                                                                           (very optimistic)
              Base: all young adults with diabetes; all parents/carers


                                 Q62 (YA): Using a scale of 5-1, where 5 means very optimistic and
                                     1 means very pessimistic, how optimistic are you about your
                                     future in terms of…? Q57 (PC): Using a scale of 5-1, where 5
                                     means very optimistic and 1 means very pessimistic, how
                                     optimistic are you about your child’s future in terms of…?
Young adults and parents/carers were generally
optimistic about their/their child’s health in future
5 – very
optimistic


                                                                               3.63.6
                3.33.3       3.3 3.4         3.33.2           3.3 3.4
                                                                                                Young adults

                                                                                                Parents /
                                                                                                carers


                                                                                                  Scale: 1 (very
1 – very                                                                                          pessimistic) to 5
pessimistic                                                                                       (very optimistic)




                  ALL          ITA         Age 0-9 Age 10-14 Age 15+
              (1905)(4099)   (311) (147)     (52) (174)      (65) (111)                Age of diabetes child/
                                                                             (30) (24)
                                                                                       Age of young adult at
                                                                                       diagnosis
                     Base: all young adults with diabetes; all parents/carers


                                        Q62 (YA): Using a scale of 5-1, where 5 means very optimistic and
                                            1 means very pessimistic, how optimistic are you about your
                                            future in terms of…? Q57 (PC): Using a scale of 5-1, where 5
                                            means very optimistic and 1 means very pessimistic, how
                                            optimistic are you about your child’s future in terms of…?
Young adults and parents/carers were optimistic
about friendships/relationships in future
5 – very
optimistic

                4.0       3.9                                       3.9
                                                        3.8


                                                                                         Young adults

                                                                                         Parents /
                                                                                         carers




1 – very
pessimistic


              (1905)    (4099)                        (311) ITA (147)                      Scale: 1 (very
                    ALL
                                                                                           pessimistic) to 5
                                                                                           (very optimistic)
              Base: all young adults with diabetes; all parents/carers


                                 Q62 (YA): Using a scale of 5-1, where 5 means very optimistic and
                                     1 means very pessimistic, how optimistic are you about your
                                     future in terms of…? Q57 (PC): Using a scale of 5-1, where 5
                                     means very optimistic and 1 means very pessimistic, how
                                     optimistic are you about your child’s future in terms of…?
The future regarding family life was viewed optimistically by
both young adults and parents/carers

5 – very
optimistic

                3.8       3.7                          3.7         3.8


                                                                                         Young adults

                                                                                         Parents /
                                                                                         carers




1 – very
pessimistic


              (1905)    (4099)                        (311) ITA (147)                      Scale: 1 (very
                    ALL
                                                                                           pessimistic) to 5
                                                                                           (very optimistic)
              Base: all young adults with diabetes; all parents/carers


                                 Q62 (YA): Using a scale of 5-1, where 5 means very optimistic and
                                     1 means very pessimistic, how optimistic are you about your
                                     future in terms of…? Q57 (PC): Using a scale of 5-1, where 5
                                     means very optimistic and 1 means very pessimistic, how
                                     optimistic are you about your child’s future in terms of…?
Optimism was evident for both groups regarding
financial well-being in future
5 – very
optimistic


                3.5       3.5                                      3.6
                                                       3.4
                                                                                         Young adults

                                                                                         Parents /
                                                                                         carers




1 – very
pessimistic


              (1905)    (4099)                        (311) ITA (147)                      Scale: 1 (very
                    ALL
                                                                                           pessimistic) to 5
                                                                                           (very optimistic)
              Base: all young adults with diabetes; all parents/carers


                                 Q62 (YA): Using a scale of 5-1, where 5 means very optimistic and
                                     1 means very pessimistic, how optimistic are you about your
                                     future in terms of…? Q57 (PC): Using a scale of 5-1, where 5
                                     means very optimistic and 1 means very pessimistic, how
                                     optimistic are you about your child’s future in terms of…?
5   Parents/carers analysis
             The vast majority of parent/carer respondents
             were parents/stepparents

                                                                                                       Parent / step-
                                                                                                       parent
Parents / Carers




                                                                                                       Grandparent




                        97%                                                                            Sibling
                                                                 98%

                                                                                                       Other family
                                                                                                       member


                                                                                                       Other type of
                                                                                                       guardian
                        1%
                        1%                                        1%
                        ALL                                       ITA
                       (4099)                                    (147)

                                Base: all parents/carers


                                          Q1 (PC): You indicated that you look after a child/young
                                          person with diabetes, as a parent or an official guardian.
                                          Please tick below your relationship to that person…
                Over two-thirds of parents/carers frequently worried about
                their child having low blood sugars (half the time or more)



                                                                                                      Half/ most/ all the
                                                                                                      time
   Parents / Carers




                             63%
                                                                       70%
                                                                                                      Sometimes




                                                                                                      Never
                             36%
                                                                       29%

                              1%                                        1%
                             ALL                                        ITA
                             (4099)                                    (147)
Mean:                         3.3                                       3.6
                                      Base: all parents/carers

                                                  Q6 (PC): How often do you worry about your child having
                                                  low blood sugars?
               Seven in ten parents/carers frequently worried about their
               child having long term health problems as a result of diabetes
               (half the time or more)


                                                                                                       Half/ most/ all the
  Parents / Carers




                                                                                                       time



                            71%                                       69%
                                                                                                       Sometimes




                                                                                                       Never
                            28%                                       30%

                             1%                                        1%
                             ALL                                       ITA
                            (4099)                                     (147)
Mean:                         3.7                                       3.7

                                     Base: all parents/carers

                                                Q7 (PC): How often do you worry about your child having
                                                long-term health problems as a result of his/her diabetes?
               Three-fifths of parents/carers feel overwhelmed by their
               child’s diabetes at least sometimes


                                                                      20%
                                                                                                       Half/ most/ all the
  Parents / Carers




                            38%                                                                        time




                                                                      41%
                                                                                                       Sometimes


                            43%


                                                                                                       Never
                                                                      39%
                            18%

                             ALL                                        ITA
                            (4099)                                     (147)
Mean:                        2.5                                       2.0

                                     Base: all parents/carers


                                                 Q8 (PC): How often do you feel that taking care of your
                                                 child’s diabetes is overwhelming?
Four-fifths of parents/carers talk to family members when
having difficulties caring for their child with diabetes, while
only about one third talk to a diabetes doctor

                                                     ALL         ITA
                                                   (4099)       (147)
                 My family                           74%         80%
                 My friends                          39%         41%
                 Diabetes doctor                     32%         34%
                 Friends who also have
                                                     27%         29%
                 children with diabetes
                 Members at the diabetes
                                                     11%         20%
                 association
                 GP/family doctor                    19%         10%
                 Psychologist/ counsellor             8%          9%
                 Diabetes nurse                      25%          7%
                 Dietician                            6%          2%



                                    Base: all parents/carers

                                                                   Excludes country answers less than 2%


                               Q9 (PC): At times when you’re feeling frustrated or finding it
                                   difficult to care for your child with diabetes, who can you talk to
                                   about your feelings? Please check all that apply.
   For half of parents/carers it was very important to
   talk to other people with children who had diabetes
                                                                                  Very important
                                                                                  (5)

             42%
                                                 50%

                                                                                  Fairly important
                                                                                  (4)



             33%
                                                 39%                              Neither
                                                                                  important nor
                                                                                  unimportant / not
                                                                                  very important /
             24%                                                                  not at all
                                                 12%                              important (3,2,1)


             ALL                                  ITA                           Scale: 1 (not at all
            (4099)                               (147)                          important) to 5 (very
                                                                                important)
Mean:        4.1                                   4.4

                     Base: all parents/carers

                           Q10 (PC): How important is it for you to talk to other people
                           with children who have diabetes?
 Two-fifths of parents/carers said they were satisfied or very
 satisfied with the support that, they, as parents/carers received
 from school                                            Scale: 1 (very dissatisfied)
                                                                                           to 5 (very satisfied)




                                                                                              Satisfied/ very
                                                                                              satisfied
                                                                 41%
    Parents / Carers




                        51%
                                                                                              Neither / Nor




                                                                 30%                          Disatisfied/ very
                        23%                                                                   dissatisfied




                        20%                                      26%                          Don't know/ not
                                                                                              stated

                         5%                                       3%
                        ALL                                       ITA
                       (4099)                                    (147)
Mean rating:             3.4                                      3.1

                                Base: all parents/carers

                                            Q12b (PC): How satisfied are you with …. the support
                                            that you, as a parent, receive from school?
Three-quarters of parents said their families had clear
agreement on responsibility for all or most aspects of their
child’s diabetes care


                                                                                        All/most
 Parents / Carers




                    72%                                 76%                             Some/few




                                                                                        None




                    22%                                 17%                             Don't know

                     5%                                  7%
                     2%
                    ALL                                  ITA
                    (4099)                              (147)

                             Base: all parents/carers


                                  Q20 (PC): For how many aspects of diabetes care does your
                                  family have clear agreement or rules about who does what
 Nearly three-fifths of parents/carers said doctors usually spent
 at least half the time talking to them about their child’s life with
 diabetes beyond medical care

                                                                                                       All / most / half
                                                                                                       the time (3,4 or 5)
   Parents / Carers




                      57%       59%              57%               57%
                                                                                      67%
                                                                                                       Sometimes (2)




                                                                                                       Never (1)
                      27%                        31%
                                34%                                38%
                                                                                      30%
                      11%                                                                              Don't know/ not
                                 6%              12%                3%
                                                                                                       stated
                       5%        1%                                 2%                 3%
                       ALL       ITA         Child aged 0-     Child aged         Child aged
                      (4099)   (147)               9             10-14               15+
                                                 (52)              (65)                (30)
                                                                                                         Scale: 1 (never) to 5
Mean rating:           3.2       3.2              3.0               3.2                 3.6              (all of the time)

                                       Base: all parents/carers

                                                  Q36 (PC): How often does the doctor spend time talking
                                                  to you about your child’s life with diabetes beyond his/her
                                                  medical care?
             About three-quarters of parents/carers stated that their child
             still sees the same doctor for his/her diabetes as when he/she
             was younger
                                                   % saying
                                                85% Yes
                               78%
                                                                   75%                 73%

                     62%
Parents / Carers




                      ALL       ITA        Child aged 0-9     Child aged 10-      Child aged 15+
                                                                    14
                     (4099)    (147)             (52)              (65)                (30)



                                Base: all parents/carers

                                        Q38 (PC): Is the doctor your child sees now for your diabetes still
                                            the same as the doctor she/he saw when he/she was younger?
                Three-quarters of parents/carers claimed their child’s
                diabetes at times prevented their own activities from
                occurring
                                                                                                 Scale: 1 (never) to 5 (all
                                                                                                 the time)
                                                                                        3%
                                  15%                                 15%
                         22%                        23%                                                   All / most / half
   Parents / Carers




                                                                                                          the time (3,4 or 5)



                                                                                       63%                Sometimes (2)
                                  59%                                 54%
                         52%
                                                    63%
                                                                                                          Never (1)




                         25%                                          32%              33%
                                  26%                                                                     Don't know
                                                    13%
                          1%
                         ALL       ITA         Child aged 0-        Child aged     Child aged
                                                     9                10-14           15+
                        (4099)    (147)
                                                    (52)              (65)             (30)

Mean rating:             2.1       2.0               2.3              1.9              1.7
                                         Base: all parents/carers


                                                 Q47 (PC): How often does your child’s diabetes prevent
                                                 you from doing things you want to do?
                 Four-fifths of parents/carers at times argue with their child
                 about their child’s approach to diabetes care
                                                                                                   Scale: 1 (never) to 5 (all
                                                                                                   the time)


                                                       6%
                                    21%                                                                  All / most / half
                          28%                                           29%              30%
    Parents / Carers




                                                                                                         the time (3,4 or 5)


                                                      48%
                                                                                                         Sometimes (2)



                          51%       60%
                                                                        66%              67%             Never (1)

                                                      42%

                          19%       18%                                                                  Don't know

                           1%                          4%                5%               3%
                           ALL      ITA          Child aged 0-        Child aged     Child aged
                                                       9                10-14           15+
                          (4099)   (147)              (52)               (65)             (30)
Mean rating:               2.3      2.2                1.7                2.4              2.5

                                           Base: all parents/carers


                                                   Q48 (PC): How often do you argue with your child about
                                                   the way in which he/she takes care of his/her diabetes?
6   Healthcare Professionals analysis
             Overall, a half of HCPs currently work as part of an integrated
             diabetes care team that meets regularly to discuss care of individual
             patients

                                                                                                     Part of an integrated
                                                                                                     diabetes care team
Healthcare Professionals




                                                                                                     that meets regularly
                                                                                                     to discuss care of
                                                                                                     individual patients
                                                                    49%
                                                                                                     Discuss individual
                           60%                                                                       patient care with
                                                                                                     other HCPs when
                                                                                                     necessary


                                                                                                     Work independently
                                                                                                     and do not discuss
                                                                                                     individual patient
                                                                                                     care with other HCPs
                                                                    42%
                           32%                                                                       Don't know




                            7%                                       9%

                            ALL                                     ITA
                           (666)                                    (78)

                                   Base: all healthcare professionals

                                               Q2 (HCP): How would you describe the way that you work
                                               with colleagues who are also involved in treating/caring for
                                               children/adolescents with diabetes under your care?
According to HCPs, the three diabetes specialists most
commonly seen at diagnosis are the diabetes specialist, the
diabetes nurse and the dietician

                                           ALL         ITA
                                          (666)        (78)
           Diabetes specialist             81%        92%
           Diabetes nurse                  79%        88%
           Dietician                       74%        69%
           Psychologist/counsellor         45%        36%
           Ophthalmologist                 33%        23%
           GP/family doctor                46%        13%
           Social worker                   29%         5%
           Podiatrist/foot specialist       8%         4%
           Pharmacist                      10%         3%



                        Base: all healthcare professionals

                                     Q7 (HCP): Which of the following healthcare professionals
                                     (HCPs) do the children/adolescents with diabetes under
                                     your care see at diagnosis?
             The vast majority of HCPs currently see children 4-12 years
             always or mostly with parents during visits for diabetes


                                                                                                     Always/mostly with
Healthcare Professionals




                                                                                                     parents




                                                                                                     Sometimes alone/
                                                                                                     sometimes with
                                                                                                     parents
                                                                    90%
                           92%

                                                                                                     Always/mostly alone




                                                                                                     Not applicable
                                                                    4%
                                                                    6%
                            4%
                            1%
                            3%                                      6%

                            ALL                                     ITA
                           (666)                                    (78)

                                   Base: all healthcare professionals

                                               Q6 (HCP): How often do you see your diabetes patient
                                               alone or together with his/her parents or other caregivers?
                                               Children 4-12 years
             Just over half of HCPs currently see children aged 13-17
             years always or mostly with parents


                                                                                                     Always/mostly with
Healthcare Professionals




                                                                                                     parents


                           51%                                      53%
                                                                                                     Sometimes alone/
                                                                                                     sometimes with
                                                                                                     parents



                                                                                                     Always/mostly alone



                           40%                                      37%

                                                                                                     Not applicable



                            9%                                      8%
                            1%                                      3%
                            ALL                                     ITA
                           (666)                                    (78)

                                   Base: all healthcare professionals

                                               Q6 (HCP): How often do you see your diabetes patient
                                               alone or together with his/her parents or other caregivers?
                                               Children 13-17 years
             Two-thirds of HCPs currently see patients aged 18-25 always
             or mostly alone

                            6%                                      6%
                                                                                                     Always/mostly with
Healthcare Professionals




                                                                                                     parents
                           17%
                                                                    22%


                                                                                                     Sometimes alone/
                                                                                                     sometimes with
                                                                                                     parents



                           61%
                                                                                                     Always/mostly alone

                                                                    70%


                                                                                                     Not applicable


                           16%
                                                                    1%
                            ALL                                     ITA
                           (666)                                    (78)

                                   Base: all healthcare professionals

                                               Q6 (HCP): How often do you see your diabetes patient
                                               alone or together with his/her parents or other caregivers?
                                               Children 18-25 years
One-third of HCPs reported that children/adolescents in their
care see a Psychologist/counsellor once a year or less often

                                                                  3%
                             8%                                                                At least every 3
                             5%                                   12%                          months
 Healthcare Professionals




                             8%
                                                                  13%
                                                                                               Every 3-6
                                                                                               months

                            34%
                                                                  33%                          Every 6-12
                                                                                               months


                                                                                               Once a year or
                                                                                               less often

                            45%                                  40%                           Don't know/not
                                                                                               applicable



                             ALL                                  ITA
                            (666)                                 (78)

                                    Base: all healthcare professionals

                                                Q8 (HCP): In general, how frequently do the
                                                children/adolescents with diabetes under your care see the
                                                following professionals (including yourself) ..
                                                Psychologist/counsellor?
About one-seventh of HCPs said children/adolescents see a
Social Worker once a year or less often

                             2%                                    1%
                             2%
                             3%                                                                   At least every 3
                                                                   15%                            months
 Healthcare Professionals




                            27%
                                                                                                  Every 3-6
                                                                                                  months


                                                                                                  Every 6-12
                                                                                                  months

                                                                  83%
                                                                                                  Once a year or
                            65%                                                                   less often


                                                                                                  Don't know/not
                                                                                                  applicable



                             ALL                                   ITA
                            (666)                                  (78)
                                    Base: all healthcare professionals


                                                Q8 (HCP): In general, how frequently do the
                                                children/adolescents with diabetes under your care see the
                                                following professionals (including yourself) ..Social worker?
About one fifth of HCPs also said children/adolescents see a
Podiatrist/foot specialist once a year or less

                             2%                                     1%
                                                                    1%
                             2%
                             3%                                                                   At least every 3
                                                                                                  months
                                                                   22%
 Healthcare Professionals




                            24%
                                                                                                  Every 3-6
                                                                                                  months


                                                                                                  Every 6-12
                                                                                                  months


                                                                   75%                            Once a year or
                            69%                                                                   less often


                                                                                                  Don't know/not
                                                                                                  applicable



                             ALL                                    ITA
                            (666)                                  (78)


                                    Base: all healthcare professionals

                                                Q8 (HCP): In general, how frequently do the
                                                children/adolescents with diabetes under your care see the
                                                following professionals (including yourself) ..Podiatrist/foot
                                                specialist?
More than two-fifths of HCPs always provide information to
patients or families about Parent Networks

                                                                                          Always
 Healthcare Professionals




                            44%                                44%

                                                                                          Sometimes/rarel
                                                                                          y


                            13%
                                                               18%
                                                                                          Never




                            38%
                                                               37%                        Not available in
                                                                                          this area


                             5%                                1%
                             ALL                               ITA
                            (666)                             (78)


                                    Base: all healthcare professionals

                                                Q9 (HCP): How often do you provide information to your
                                                patients and their families about … Networking activities
                                                for parents to meet other parents of children with
                                                diabetes? (parent networks)
Over half of HCPs always provide information to patients or
families about network activities to meet other children (e.g.
children’s camps)

                                                                                          Always
 Healthcare Professionals




                            47%
                                                               54%
                                                                                          Sometimes/rarel
                                                                                          y



                            13%
                                                                                          Never
                                                               18%


                            35%
                                                                                          Not available in
                                                               26%                        this area


                             5%                                3%
                             ALL                               ITA
                            (666)                             (78)


                                    Base: all healthcare professionals

                                                Q9 (HCP): How often do you provide information to your
                                                patients and their families about … Networking activities
                                                for children and adolescents with diabetes to meet other
                                                children with diabetes? (e.g. children’s camps)
Only a quarter of HCPs always provided information to
patients or families about family activities (for children,
adolescents and their family members) to meet other families

                                                                                           Always
                            31%                                28%
 Healthcare Professionals




                                                                                           Sometimes/rarel
                                                                                           y
                            23%
                                                               35%

                                                                                           Never



                            41%
                                                               35%                         Not available in
                                                                                           this area


                             6%                                3%
                             ALL                               ITA
                            (666)                             (78)


                                    Base: all healthcare professionals

                                                Q9 (HCP): How often do you provide information to your
                                                patients and their families about … Family activities (for
                                                children, adolescents and their family members) to meet
                                                other families?
     Half of HCPs always provide information to patients or
     families about structured diabetes education programmes


                                                                                       Always
Healthcare Professionals




                                                             51%
                           57%
                                                                                       Sometimes/rarel
                                                                                       y



                                                                                       Never
                           13%                               20%


                                                                                       Not available in
                           27%                               27%                       this area


                            3%                                1%
                            ALL                              ITA
                           (666)                             (78)


                                   Base: all healthcare professionals

                                               Q9 (HCP): How often do you provide information to your
                                               patients and their families about … Structured diabetes
                                               education programmes (e.g. better diabetes knowledge,
                                               insulin adjustment skills, adherence, self-care etc.)?
Three-fifths of HCPs always provide information to patients or
families about activities or materials to help parents inform
school staff about their child’s diabetes

                                                                                            Always
 Healthcare Professionals




                            59%                                60%                          Sometimes/rarel
                                                                                            y



                                                                                            Never

                            10%
                                                               14%

                                                                                            Not available in
                            30%                                                             this area
                                                               24%

                             1%                                 1%
                             ALL                                ITA
                            (666)                              (78)


                                    Base: all healthcare professionals

                                                Q9 (HCP): How often do you provide information to your
                                                patients and their families about …Activities or materials to
                                                help parents inform school staff about their child’s
                                                diabetes?
Only about one-fifth of HCPs currently evaluate the
psychosocial needs of children/adolescents with diabetes and
parents/carers using a structured assessment tool routinely
(all the time)

                                         22%
                Always
                                         21%

                                                          49%
        Sometimes/rarely
                                                                    65%
                                                                                            All (666)
                                                                                            Italy (78)
                                       21%
                 Never
                                     14%

                                 7%
             Don’t know



                Base: all healthcare professionals

                                Q10 (HCP) How often do you evaluate psychosocial needs of the
                                children/adolescents with diabetes and their parents under your
                                care using a structured assessment tool?
The vast majority of HCPs who currently rarely or never
evaluate the psychosocial needs of children/parents would be
interested in using a psychosocial assessment tool in the
future

                                                                                                      Yes - interested
   Healthcare Professionals




                                                                                                      in using
                                                                                                      structured
                                                                                                      psychosocial
                                                                                                      assessment tool



                                      94%                                   95%

                                                                                                      No-not
                                                                                                      interested in
                                                                                                      using
                                                                                                      psychosocial
                                                                                                      assessment tool



                                      5%                                    5%
                                      ALL                                   ITA
                              Base:   254                                    41


                                            Base: all healthcare professionals who rarely/never
                                            evaluate the psychosocial needs of children/parents
                                                         Q11 (HCP): Would you be interested in using a structured
                                                         psychosocial assessment tool in the future?
Two-fifths of HCPs always take the initiative to discuss
emotional distress related to diabetes with children/adolescents


                                                                                           Always
 Healthcare Professionals




                                                               41%
                            52%
                                                                                           Sometimes/rarel
                                                                                           y



                                                                                           Never


                                                               59%
                            47%
                                                                                           Don't know




                            ALL                                ITA
                            (666)                              (78)

                                    Base: all healthcare professionals

                                                Q12 (HCP): How often do you take the initiative to
                                                discuss any of the following issues with your diabetes
                                                patients .. Emotional distress related to diabetes?
Three-fifths of HCPs always take the initiative to review difficulties
with diabetes self-management with children/adolescents

                                                                                             Always
   Healthcare Professionals




                                                                 62%                         Sometimes/rarel
                              73%                                                            y



                                                                                             Never




                                                                 39%                         Don't know
                              26%

                               1%
                              ALL                                ITA
                              (666)                              (78)

                                      Base: all healthcare professionals

                                                  Q12 (HCP): How often do you take the initiative to
                                                  discuss any of the following issues with your diabetes
                                                  patients .. Review of difficulties with diabetes self-
                                                  management ?
A quarter of HCPs always take the initiative to discuss family
functioning (split of responsibilities, conflicts, etc.) with
children/adolescents

                                                                                              Always
                                                                26%
 Healthcare Professionals




                            50%
                                                                                              Sometimes/rarel
                                                                                              y



                                                                                              Never
                                                                69%

                            49%
                                                                                              Don't know



                             1%                                  5%

                            ALL                                 ITA
                            (666)                               (78)

                                    Base: all healthcare professionals

                                                Q12 (HCP): How often do you take the initiative to
                                                discuss any of the following issues with your diabetes
                                                patients .. Family functioning (split of responsibilities,
                                                conflicts, etc.)?
Two-fifths of HCPs always take the initiative to discuss issues
related to diabetes at school with children/adolescents

                                                                                           Always
 Healthcare Professionals




                                                               38%
                            55%
                                                                                           Sometimes/rarel
                                                                                           y



                                                                                           Never


                                                               60%
                            44%
                                                                                           Don't know



                             1%                                1%
                            ALL                                ITA
                            (666)                              (78)

                                    Base: all healthcare professionals

                                                Q12 (HCP): How often do you take the initiative to
                                                discuss any of the following issues with your diabetes
                                                patients .. Issues related to diabetes at school?
HCPs said just under one-quarter of children/adolescents in
their care are not in good glycaemic control due to unresolved
psychological/social problems


                             26%
 % of children/adolescents




                                                                           23%




                             ALL                                            ITA
                             (666)                                          (78)

                                     Base: all healthcare professionals

                                                 Q13 (HCP): Considering the children/adolescents with
                                                 diabetes under your care, approximately what percentage
                                                 of these patients .. Are not in good glycaemic control
                                                 because of unresolved psychological or social problems
                                                 (e.g. depression, family issues, poor coping, lack of
                                                 motivation, etc)?
HCPs stated that about one fifth of children/adolescents in
their care are not in good glycaemic control due to poor
adherence to their insulin regimen

                             24%
 % of children/adolescents




                                                                           21%




                             ALL                                            ITA
                             (666)                                          (78)

                                     Base: all healthcare professionals


                                                 Q13 (HCP): Considering the children/adolescents with
                                                 diabetes under your care, approximately what percentage
                                                 of these patients .. Are not in good glycaemic control
                                                 because of poor adherence to their insulin regimen?
HCPs stated that about one quarter of children/adolescents in
their care experienced difficulties with parents being over-
protective or nagging

                             26%
 % of children/adolescents




                                                                            23%




                             ALL                                             ITA
                             (666)                                           (78)

                                     Base: all healthcare professionals


                                                 Q13 (HCP): Considering the children/adolescents with
                                                 diabetes under your care, approximately what percentage
                                                 of these patients .. Experience difficulties with parents
                                                 being over-protective or nagging?
HCPs stated that about one tenth of children/adolescents in
their care experience difficulties due to parents not being
involved enough in their diabetes

                             19%
 % of children/adolescents




                                                                             11%




                             ALL                                              ITA
                             (666)                                            (78)

                                     Base: all healthcare professionals


                                                 Q13 (HCP): Considering the children/adolescents with
                                                 diabetes under your care, approximately what percentage
                                                 of these patients .. Experience difficulties due to parents
                                                 not being involved enough in their diabetes?
According to two-thirds of HCPs, the main reason children/
adolescents do not adhere to their insulin regimen is worry
about hypoglycaemia


                                               ALL        ITA
                                              (666)       (78)
             Worry about hypoglycaemia        61%         67%
             Lack of support from
             family/ friends
                                              54%         41%
             Worry about weight gain          39%         40%
             Lack of support from the
             school
                                              46%         37%
             Lack of adequate
             knowledge/ skills
                                              37%         37%
             Lack of access to insulin/
             monitoring supplies
                                              16%          1%
             Other                            25%         13%


                       Base: all healthcare professionals


                                     Q14 (HCP): In your opinion, what do you think are the
                                     main reasons why children/adolescents with diabetes do
                                     not adhere to their insulin regimen?
HCPs believed that a minority of children/adolescents experience
depression and/or anxiety due to their diabetes, but more than
twice as many experienced anxiety as experienced depression
                14%
a) Depression




                                                             12%




                 ALL                                          IT A
                (666)                                         (78)                       % of children/
                                                            28%
                                                                                         adolescents
                                                                                         experiencing
                                                                                         disorder
b) Anxiety




                 25%




                  ALL                                        IT A
                 (666)                                    (78)
                         Base: all healthcare professionals

                                     Q15 (HCP): Approximately what percentage of the
                                     children/adolescents with diabetes under your care
                                     experience …depression due to their diabetes..anxiety due
                                     to their diabetes?
A third of HCPs thought they were able to provide adequate
psychosocial support to all or more than half of children/
adolescents with diabetes who had psychosocial problems



                                                                                                 More than
 Healthcare Professionals




                                                                   34%                           half/All
                            45%



                                                                                                 Half
                                                                   27%
                            22%



                                                                                                 None/less than
                                                                   40%                           half
                            33%



                            ALL                                     ITA
                            (666)                                  (78)


                                    Base: all healthcare professionals

                                                Q16 (HCP): In your opinion, for what proportion of the
                                                children/adolescents with diabetes under your care, who
                                                have psychosocial problems, are you or your healthcare
                                                team able to provide adequate psychosocial support?
Overall, HCPs referred less than one tenth of children/adolescents
to mental health specialists or counsellors for psychosocial support
on an annual basis

                  19%




                                                                                        % of children/
                                                                 7%                     adolescents
                                                                                        referred




                   ALL                                           ITA
                  (666)                                         (78)

                          Base: all healthcare professionals


                                      Q17 (HCP): Of the children/adolescents with diabetes
                                      under your care, approximately what percentage do you
                                      refer to mental health specialists or counsellors for
                                      psychosocial support on an annual basis?
          According to HCPs, about one-fifth of parents/carers
          experience depression due to their child’s/adolescent’s
          diabetes; nearly twice as many experienced anxiety
                                                                 23%
a) Depression




                        20%




                         ALL                                       IT A
                                                                                           % of parents/
                        (666)                                     (78)
                                                                                           carers experiencing
                                                                                           disorder
                                                                 44%
b) Anxiety




                         37%




                          ALL                                      IT A

                         (666)                                  (78)
                                 Base: all healthcare professionals
                                             Q18 (HCP): Now, approximately what percentage of the
                                             parents/carers of children/adolescents with diabetes under
                                             your care experience…depression due to their child’s
                                             diabetes…anxiety due to their child’s diabetes?
Just over half of HCPs believed that children’s/ adolescents’
diabetes had a major or moderate impact on their performance at
school




                                                           55%
               68%                                                                       Major/mode
                                                                                         rate impact

                                                                                         Minor
                                                                                         impact

                                                           29%                           No impact

               23%
                                                                                         Don't
                2%                                         10%                           know/depen
                7%                                          5%                           ds

                ALL                                         ITA
               (666)                                       (78)


                       Base: all healthcare professionals

                                   Q19 (HCP): In general, how much of an impact do you
                                   think your patients’ (children and adolescents) diabetes
                                   have on their performance at school?
About two-fifths of HCPs believed that major/moderate improvement in
the quality of resources/services/support was needed in the medical
management of children’s/ adolescents’ diabetes




             46%                              44%
                                                                            Major/moderate improvement
                                                                            Minor improvement
                                                                            No improvement
                                                                            Don't know/depends


             42%                              45%



              8%                               6%
              3%                               5%
              ALL                              ITA
             (666)                            (78)

                       Base: all healthcare professionals

                                   Q23a (HCP): When considering the quality of resources,
                                   services and support available to the children/adolescents
                                   with diabetes under your care (and their families), how
                                   much improvement is needed in … medical management?
Four-fifths of HCPs believed that major/moderate improvement in the
quality of resources/services/support was needed in the area of
psychosocial support from the healthcare team for children/ adolescents
with diabetes




                                                                            Major/moderate improvement
                                                                            Minor improvement
              79%                             82%                           No improvement
                                                                            Don't know/depends




              16%                             14%
              2%
              2%                               3%
                                               1%
               ALL                             ITA
              (666)                            (78)


                       Base: all healthcare professionals

                                   Q23b (HCP): When considering the quality of resources,
                                   services and support available to the children/adolescents
                                   with diabetes under your care (and their families), how
                                   much improvement is needed in … psychosocial support
                                   from the healthcare team?
Just over two-thirds of HCPs believed that major/moderate improvement
in the quality of resources/services/support was needed in age-
appropriate self-management education for children/ adolescents with
diabetes




                                                                            Major/moderate improvement
             65%                              70%                           Minor improvement
                                                                            No improvement
                                                                            Don't know/depends




             28%
                                              26%

              5%                               4%
              2%                               1%
              ALL                              ITA
             (666)                             (78)


                       Base: all healthcare professionals

                                   Q23c (HCP): When considering the quality of resources,
                                   services and support available to the children/adolescents
                                   with diabetes under your care (and their families), how
                                   much improvement is needed in … age-appropriate self-
                                   management education?
More than four-fifths of HCPs thought that major/moderate improvement
in the quality of resources/services/support was needed in terms of
support and understanding from schools for children/ adolescents with
diabetes




                                                                            Major/moderate improvement
                                                                            Minor improvement
             85%                              88%                           No improvement
                                                                            Don't know/depends




             12%                               8%
              3%                               4%
              ALL                              ITA
             (666)                             (78)


                       Base: all healthcare professionals

                                   Q23d (HCP): When considering the quality of resources,
                                   services and support available to the children/adolescents
                                   with diabetes under your care (and their families), how
                                   much improvement is needed in … support and
                                   understanding from school?
Three-quarters of HCPs thought that major/moderate improvement in the
quality of resources/services/support was needed in terms of
camps/networking opportunities for children and families




                                                                           Major/moderate improvement
             71%                             74%
                                                                           Minor improvement
                                                                           No improvement
                                                                           Don't know/depends




             22%                             17%

             3%                               4%
             5%                               5%
              ALL                             ITA
             (666)                            (78)


                      Base: all healthcare professionals

                                  Q23e (HCP): When considering the quality of resources,
                                  services and support available to the children/adolescents
                                  with diabetes under your care (and their families), how
                                  much improvement is needed in … camps/networking
                                  opportunities for children and families?
Four-fifths of HCPs thought that major/moderate improvement in the
quality of resources/services/support was needed in terms of the
transition process from paediatric to adult care for children/adolescents
with diabetes




                                                                            Major/moderate improvement
                                                                            Minor improvement
              81%                              81%                          No improvement
                                                                            Don't know/depends




              13%                              12%
               3%                               5%
               3%                               3%
               ALL                              ITA
              (666)                             (78)


                        Base: all healthcare professionals

                                    Q23f (HCP): When considering the quality of resources,
                                    services and support available to the children/adolescents
                                    with diabetes under your care (and their families), how
                                    much improvement is needed in … transition process from
                                    paediatric to adult care?
Four-fifths of HCPs judged their country’s healthcare system
to be good/excellent at providing adequate care and
education for children/adolescents with diabetes
 Healthcare Professionals




                                                                                           Good/Excellent


                             61%
                                                                81%
                                                                                           Fair




                             24%
                                                                                           Poor

                                                                15%
                             15%
                                                                 4%
                              ALL                                ITA
                            (666)                               (78)

                                    Base: all healthcare professionals
                                                Q24 (HCP): In general, how well is your country’s
                                                healthcare system organised to provide adequate care and
                                                education for children and adolescents with diabetes?
7   Conclusions
    Self-management
•   Only half of young people believed their blood sugar monitoring
    currently met targets outlined in recommendations they had been
    given.
•   Similarly, healthcare professionals reported about half the
    children/adolescents with diabetes under their care had adequate
    levels of HbA1c.
•   Young adults reported the greatest difficulties managing to do
    exercise, monitoring of blood sugars, and coping with diabetes in
    general.
•   Healthcare professionals agreed that children/adolescents were least
    successful in achieving an adequate level of exercise, but only a
    quarter felt that all or most of their patients were coping well
    emotionally with their diabetes.
•   HCPs estimated that control was poorer with children aged 0-12 than
    control for adolescents.
•   Wider dissemination of information to young adults about blood sugar
    testing, treatment and complications of diabetes would be useful.
Parent perspective

• 69% of parents worried about long-term
 health problems for their children, yet
 only one-third talk to their child’s diabetes
 doctor when having difficulty managing
 their child’s diabetes.
• 70% of parents/carers expressed
 worry/concern over their children having
 low blood sugar at least half the time
Perception of healthcare professionals

• Frustration and unhappiness related to diabetes
  is most often expressed to family and friends of
  young people, not directly to the healthcare
  professionals involved in the care of their
  diabetes.
• Only a half of young adults felt that their doctors
  and/or professionals in their diabetes team had a
  good understanding of the challenges or
  difficulties they faced on a daily basis managing
  their diabetes.
• Two-thirds of parents/carers echoed this belief
Perceptions of healthcare support
• Both young adults and parents/carers said that various
  healthcare professionals seen for diabetes management
  were not always available when needed.
• The perception exists amongst some young adults and
  parents/carers that there is a lack of communication
  amongst healthcare professionals caring for young people
  regarding individual cases (i.e. they don’t talk to each
  other).
• However, half of healthcare professionals stated that they
  currently work as part of an integrated diabetes care team
  that meets regularly to discuss care of individual patients.
• Considering all healthcare professionals currently seen for
  their diabetes, young adults felt they had the best support
  from the diabetes specialist. Similar findings were apparent
  for parents/carers.
Psychosocial care approach

• Only around one-fifth of HCPs currently
 evaluate the psychosocial needs of
 children/adolescents with diabetes and
 parents/carers using a structured
 assessment tool routinely (all the time).
• But the vast majority who are not
 currently utilising such a tool for
 assessment would be interested in doing
 so, in future.
Community support
• Only about one seventh of young adults
 and one fifth of parents/carers were
 actively involved in community activities
 around diabetes, yet of those young
 adults not currently involved, one quarter
 would like to be involved in some way.
• Both young adults and parents/carers
 considered it important to talk to other
 young adults with diabetes/other parents
 and carers.
    Conclusions: School
•   Although support from various sources regarding diabetes was
    judged by young adults as acceptable, overall, respondents felt
    that the least support came from schools, their communities
    and society in general.
•   Both young adults and parents/carers identified a need for
    increased teacher training at schools to deal with emergency
    situations, and parents/carers also wanted teachers to be better
    informed about diabetes.
•   Other than friends, teachers were the individuals that young
    people were most likely to approach if help was needed
    managing their diabetes at school, according to all three
    groups.
•   However, readily available glucagon at schools would also help.
   Overall needs for improvements
• The two main improvements needed for diabetes
   management identified by both young adults and
   parents/carers were easier monitoring of blood
   sugars, and improved public knowledge of
   diabetes.
• The majority of healthcare professionals thought
   that a major/moderate improvement is needed in
   the quality of several different aspects of
   resources, services and support available for
   children/adolescents with diabetes and their
   families (except in the area of medical
   management).
Financial burden and treatments

• Diabetes management represents a
  moderate/major financial burden for
  approximately one fifth of young adults
  and a third of parents/ carers, with one
  fifth of families claiming limited financial
  ability to cope with the needs of diabetes
  management.
• All three respondent groups believed that
  insulin pumps are more difficult to obtain
  than other medicines/devices required for
  managing diabetes.
8   Call to Action
    Call to Action
• Increase the communication between child, family and healthcare
    professional
•   Manage the transition’s phase between the Paediatrics Diabethological
    support and the adult one.
•   Promote to self control and self management
•   Give psychological support to young people with Diabetes and their
    families.
•   Start up Information’s programs and assistance in the school sphere
•   Facilitate the introduction of young people in aggregation, play and sports
    paths
•   Awaken public opinion to early diagnosis of child’s Diabetes
•   Increase the sensitiveness of institutional key opinion leader towards the
    individual, familiar needs, related to juvenile Diabetes

				
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