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					Hearing the Voices
of the Children
  Measuring Pediatric Health-Related
 Quality of Life from the Perspective of
    the Children and Their Parents
      Quantifying the Qualitative
         James W. Varni, Ph.D.
         Texas A&M University
                                           1
World Health Organization Definition


 “Health as a state of complete
 physical, mental, and social well-
 being, and not merely the absence
 of disease or infirmity.”
     - World Health Organization (1948)



                                      2
Quality of Life Measurements
   In recent years, Quality of Life (QOL)
    measurement has emerged as an
    important health outcome in clinical
    trials, clinical practice improvement
    strategies, and healthcare services
    research and evaluation



                                             3
Use of QOL assessments
   Utilizing QOL assessments in the clinical setting can
    facilitate physician-patient communication and
    identify “hidden morbidities,” or physical and
    psychosocial functioning deficits in individual patients
    that might otherwise go under-identified.
   Results of such assessment may indicate problem
    areas that need to be further explored and can aid a
    physician or other healthcare professional in
    designing treatment interventions and/or making the
    appropriate referrals



                                                         4
Pediatric QOL measurement
   Prediction of pediatric risk and future
    resource utilization may assist in proactive
    targeting of healthcare resources to minimize
    morbidity and associated costs.
   Serial QOL screenings integrated into
    standard clinical practice may increase the
    probability that pediatric patients can be
    managed with optimal QOL.


                                               5
               The PedsQL™
Pediatric Quality of Life Inventory™

   Pediatric Health-Related Quality of Life
    Measurement Experiences with 18,792
    Healthy and Ill Children and
    Adolescents and Their Parents:
   Child Self-Report (N = 11,355 )
   Parent Proxy-Report (N = 18,617)


                                           6
The PedsQL™
   Measures Child’s and Parent’s
    Perceptions of Child’s Health-Related
    Quality of Life

   Child Self-Report: Ages 5-18

   Parent Proxy-Report: Ages 2-18

                                            7
    The PedsQL™ Instructions
         (Child Report)

   Standard Version
       In the past ONE month, how much of a
        problem has this been for you …


   Acute Version
       In the past 7 days, how much of a problem
        has this been for you …


                                                8
    The PedsQL™ Instructions
         (Parent Report)

   Standard Version
       In the past ONE month, how much of a
        problem has your child had with …


   Acute Version
       In the past 7 days, how much of a problem
        has your child had with …


                                                9
             Scaling (0-4)

         Never              0
         Almost Never       1
         Sometimes          2
         Often              3
         Almost Always      4
   Reverse Scored to 0-100 Scale
   100 Representing Higher HRQOL
                                    10
                   23 Items


   Approx. 5 minutes to complete

   4 domains:
       Physical Functioning (8 items)
       Emotional Functioning (5 items)
       Social Functioning (5 items)
       School Functioning (5 items)


                                          11
        Sample Subscale Items

   Physical Functioning
       It is hard for me to walk more than one block

   Emotional Functioning
       I feel sad or blue

   Social Functioning
       I have trouble getting along with other kids

   School Functioning
       I have trouble keeping up with my schoolwork

                                                        12
                                     PedsQL™ Sample
                                                                                       In the past ONE month, how much of a problem has this been for you …

ID# ____________
                                                                                        About My Health and Activities (problems with…)             Ne       S       Al
Date:________                                                                                                                                            A       O
                                                                                                                                                         l
                                                                                          1. It is hard for me to walk more than one block          0    1   2   3   4



                                                            ™
                                                                                          2. It is hard for me to run                               0    1   2   3   4


                         PedsQL                                                           3. It is hard for me to do sports activity or exercise

                                                                                          4. It is hard for me to lift something heavy
                                                                                                                                                    0

                                                                                                                                                    0
                                                                                                                                                         1

                                                                                                                                                         1
                                                                                                                                                             2

                                                                                                                                                             2
                                                                                                                                                                 3

                                                                                                                                                                 3
                                                                                                                                                                     4

                                                                                                                                                                     4

                                                                                          5. It is hard for me to take a bath or shower by myself   0    1   2   3   4

         Pediatric Quality of Life                                                        6. It is hard for me to do chores around the house        0    1   2   3   4



                Inventory
                                                                                          7. I hurt or ache                                         0    1   2   3   4

                                                                                          8. I have low energy                                      0    1   2   3   4


                                                                                        About My Feelings (problems with…)                          Ne       S       Al
                                       Version 4.0                                                                                                       A
                                                                                                                                                         l
                                                                                                                                                                 O

                                                                                          1. I feel afraid or scared                                0    1   2   3   4
                      CHILD REPORT (ages 8-12)                                            2. I feel sad or blue                                     0    1   2   3   4

                                                                                          3. I feel angry                                           0    1   2   3   4

                                                                                          4. I have trouble sleeping                                0    1   2   3   4

                                                                                          5. I worry about what will happen to me                   0    1   2   3   4
                                    DIRECTIONS
                                                                                        How I Get Along with Others (problems with…)                Ne       S       Al
                                                                                                                                                         A       O
          On the following page is a list of things that might be a problem for you.                                                                     l
          Please tell us how much of a problem each one has been for you                  1. I have trouble getting along with other kids           0    1   2   3   4
          during the past ONE month by circling:                                          2. Other kids do not want to be my friend                 0    1   2   3   4

                                                                                          3. Other kids tease me                                    0    1   2   3   4
       0 if it is never a problem
                                                                                          4. I cannot do things that other kids my age can do       0    1   2   3   4
       1 if it is almost never a problem
                                                                                          5. It is hard to keep up when I play with other kids      0    1   2   3   4
       2 if it is sometimes a problem
       3 if it is often a problem
       4 if it is almost always a problem                                               About School (problems with…)                               Ne       S       Al
                                                                                                                                                         A       O
                                                                                                                                                         l
                                                                                          1. It is hard to pay attention in class                   0    1   2   3   4
          There are no right or wrong answers.                                            2. I forget things                                        0    1   2   3   4
          If you do not understand a question, please ask for help.
                                                                                          3. I have trouble keeping up with my schoolwork           0    1   2   3   4
                                                                                          4. I miss school because of not feeling well              0    1   2   3   4
                                                                                          5. I miss school to go to the doctor or hospital          0    1   2   3   4




                                                                                                                                                                          13
    The PedsQL™ Generic Core

   Total Scale Score
   Two Summary Scores
       Physical Health                    Total

       Psychosocial Health
                                Physical           Psychosocial
   Three domains within
    Psychosocial Health
                                 Emotional          Social        School
       Emotional Functioning
       Social Functioning
       School Functioning



                                                                     14
  PedsQL™ Disease and
Condition Specific Modules
   Asthma
   Arthritis/Rheumatology
   Cancer
   Diabetes
   Cardiac
   Multidimensional Fatigue Scale
   Cerebral Palsy, Brain Tumor, End-Stage Renal
    Disease, Solid Organ Transplant and other
    modules under development
                                            15
    Internal Consistency Reliability:
    Healthy Children (N= 16,417)

 Scale                        2-4       5-7       8-12      13-18        Total
 Child Self-Report

   Total                       NA       0.86       0.90       0.91         0.89
   Physical                    NA       0.71       0.80       0.85         0.80

   Psychosocial                NA       0.83       0.87       0.87         0.86
 Parent Proxy-Report

   Total                      0.92      0.90       0.92       0.93        0.92*

   Physical                   0.85      0.89       0.89       0.89        0.89
   Psychosocial               0.86      0.85       0.88       0.89        0.88*

Reliability is strong for all age groups; 0.70 is standard for group comparisons
* Includes only 5-18 data, as School Functioning scale for 2-4 has only 3 items
                                                                             16
   Internal Consistency Reliability:
   Children with Chronic Health
   Conditions (N = 1,732)
 Scale                        2-4       5-7       8-12      13-18        Total
 Child Self-Report

   Total                       NA       0.86       0.89       0.90         0.89
   Physical                    NA       0.75       0.79       0.84         0.80
   Psychosocial                NA       0.81       0.86       0.88         0.86
 Parent Proxy-Report

   Total                      0.90      0.90       0.90       0.89        0.90*

   Physical                   0.86      0.87       0.88       0.86        0.87
   Psychosocial               0.80      0.86       0.86       0.89        0.86*

Reliability is strong for all age groups; 0.70 is standard for group comparisons
* Includes only 5-18 data, as School Functioning scale for 2-4 has only 3 items
                                                                             17
        Healthy Children and Children
        with Chronic Health Conditions

                                      Child Self-Report
                         85
                                                                    Chronic
                                                                    Healthy
                         80
Chronic < healthy
(p<.001 on all scales)
                         75



                         70



                         65
                              Total       Physical   Psychosocial

                                                                         18
        Healthy Children and Children
        with Chronic Health Conditions

                                 Parent Proxy-Report
                         85
                                                                Chronic
                                                                Healthy
                         80
Chronic < healthy
(p<.001 on all scales)
                         75



                         70



                         65
                              Total   Physical   Psychosocial

                                                                     19
     Comparisons Across Chronic
     Health Conditions- Child Report
85



80



75



70



65



60
          Total              Physical                 Psychosocial


        Healthy   Diabetes        Cardiac        Asthma

        ESRD      Cancer          Rheumatology   CP


                                                                     20
     Comparisons Across Chronic
     Health Conditions- Parent Report
85

80

75

70

65

60

55

50

45

40
          Total              Physical                 Psychosocial


        Healthy   Diabetes        Cardiac        Asthma

        ESRD      Cancer          Rheumatology   CP


                                                                     21
                     Sensitivity of the PedsQL™:
                       ESRD Treatment Type

       Child Self-Report                           Parent Proxy-Report
85                                            85
                    p<.05                                        p<.01
     p<.01                         p<.05
80                                            80
                                                   p<.01
                                                                               p<.01
75                                            75


70                                            70


65                                            65


60                                            60
     Total        Physical     Psychosocial        Total        Physical     Psychosocial



       Dialysis              Transplant              Dialysis              Transplant



                                                                                            22
                         Sensitivity of the PedsQL™:
                           Cancer Treatment Type

                  Child Self-Report                                    Parent Proxy-Report
85                                                           85
                         a<c***
         a<c**
80                                                           80
                                                                    a<c*            a<c**

75                                                           75


70                                                           70


65                                                           65


60                                                           60
          Total         Physical      Psychosocial                  Total         Physical     Psychosocial


     On Tx (a)     Off < 12 Mo. (b)    Off Long Term (c )      On Tx (a)    Off < 12 Mo. (b)   Off Long Term (c )


                                             * p<.05, **p<.01, *** p<.001
                                                                                                              23
                   Sensitivity of the PedsQL™:
                  Rheumatic Diagnostic Groups

         Child Self-Report                                     Parent Proxy-Report
                                                            a<b**
80 a<b,c,d***     a<b,c,d***   a<b,c,d***             80
                                                            a<c,d***       a<b**
75                                                    75                   a<c,d***

70                                                    70

65                                                    65

60                                                    60

55                                                    55

50                                                    50                               a<b*

45                                                    45                               a<c,d***

40                                                    40
       Total        Physical   Psychosocial                   Total       Physical     Psychosocial

 FMS (a)       DMS (b)    JRA (c )    SLE (d)              FMS (a)     DMS (b)       JRA (c )     SLE (d)

                     *p<.05, **p<.01,*** p<.001; FMS = Fibromyalgia, DMS = Dermatomyositis,
                     JRA = Juvenile Rheumatoid Arthritis, SLE = Systemic Lupus Erythematosus      24
                   Sensitivity of the PedsQL™:
                          Diabetes Type

       Child Self-Report                         Parent Proxy-Report
90                                         90


85   p<.05                                 85
                               p<.01
80                                         80


75                                         75


70                                         70


65                                         65
     Total       Physical   Psychosocial        Total       Physical   Psychosocial



        Type 1              Type 2                 Type 1              Type 2



                                                                                      25
                    Sensitivity of the PedsQL™:
                           Weight Status
        Child Self-Report                                       Parent Proxy-Report
90                                                  90

85                                                  85

80                                                  80

75                                                  75

70                                                  70

65                                                  65

60                                                  60
     Total       Physical     Psychosocial                   Total        Physical    Psychosocial

     Not overweight            Overweight                   Not overweight             Overweight
     Obese                     Severely Obese               Obese                      Severely Obese

       P<.001 for Total & Physical                             P<.001 for Total & Physical

                         Note: group differences do not include severely obese
                                                                                                 26
                      Sensitivity of the PedsQL™:
                           Cardiac Severity

       Child Self-Report                                         Parent Proxy-Report
95                                                     95                       1> 2,3 *
                                                                                1> 4***
90                                                     90        1> 2,3 *
                    1> 2,4 *                                                    2,3> 4*
                                                                 1> 4***
85                                                     85
                                                                 2> 4*
                                                                                                1> 4 ***
80                                                     80

75                                                     75

70                                                     70

65                                                     65

60                                                     60
     Total       Physical      Psychosocial                     Total       Physical       Psychosocial


        NYHA 1                 NYHA 2                              NYHA 1                  NYHA 2
        NYHA 3                 NYHA 4                              NYHA 3                  NYHA 4
                                          * p<.05, *** p<.001
                                                                                                      27
                        Sensitivity of the PedsQL™:
                      Cerebral Palsy Diagnostic Groups

            Child Self-Report
                                                                             Parent Proxy-Report
                      c<a***
                                       c<a**
80                    c<b**                                     80
     c<a,b***
                                       c<b***
75                                                              75

70                                                              70

65                                                              65      c<a,b***                        c<a,b*
60                                                              60                    c<a,b***

55                                                              55

50                                                              50

45                                                              45

40                                                              40
          Total        Physical       Psychosocial                         Total       Physical       Psychosocial


     Hemiplegia (a)    Diplegia (b)      Quadriplegia ( c)           Hemiplegia (a)    Diplegia (b)      Quadriplegia ( c)


                                                     **p<.01, *** p<.001                                             28
                Responsiveness of the PedsQL™:
                    Rheumatology Sample

             Child Self-Report                             Parent Proxy-Report
85                                                 80


80
                                                   75

75
                                                   70
70

                                                   65
65


60                                                 60
       Time 1        Time 2        Time 3                Time 1        Time 2        Time 3


     Total         Physical         Psychosocial        Total        Physical          Psychosocial

Time 1<Time 2**, Time 1<Time 3*** for all scales         Time 1<Time 2, Time 3** for all scales

                                                                                              29
       Parent-Child Concordance

 Sample                                Total             Physical               Psychosocial
 Healthy                                0.54                 0.44                   0.56
 Chronic                                0.61                 0.54                   0.61
   Asthma                               0.62                 0.53                   0.61
   Cancer                               0.56                 0.57                   0.49
   Cardiac                              0.59                 0.59                   0.55
                                                                                           (NS)
   Cerebral Palsy                       0.40                 0.57                   0.20
   Diabetes                             0.45                 0.37                   0.46
   ESRD                                 0.64                 0.67                   0.55
   Rheumatology                         0.74                 0.76                   0.65

All correlations are significant (p<.001) unless noted (NS = not significant)


                                                                                                  30
                 Healthcare Costs by Chronicity


            Percent of cost at each follow-up period, by PedsQL™ Physical Function
            quintile and chronic condition status
                       Lowest Quintile       2nd Quintile        3rd Quintile      4th/5th Quintile
                          (N = 51)            (N = 45)            (N = 48)            (N = 99)
                      Chronic Condition   Chronic Condition   Chronic Condition   Chronic Condition

                       Yes        No        Yes       No        Yes        No       Yes         No

               6      37.43*     9.35      26.76      9.30     0.33       6.95     7.59         2.30
% of cost




             months

              12      59.16*     4.70     20.56       4.54     0.30       3.63     5.25         1.85
             months

              24      61.74*     3.38     22.06       2.86     0.41       2.64     4.87         2.03
             months


              * = high risk group; accounts for 62% of healthcare costs after 24 months, even
              though it represents only 8.7% (n = 21) of the total sample (n = 241)              31
Parent proxy PedsQL & Costs
   Parent proxy-reported PedsQL™ scores prospectively accounted
    for significant variance in healthcare costs at 6, 12, and 24
    months. Adjusted regression models that included both
    PedsQL™ scores and chronic health condition status accounted
    for 10%, 14%, and 21% of the variance in healthcare costs at
    6, 12, and 24 months.

   Parent proxy-reported PedsQL™ scores and chronic health
    condition status together defined a ‘high risk’ group,
    constituting 8.7% of the sample and accounting for 37%, 59%,
    and 62% of healthcare costs at 6, 12, and 24 months.

   The high risk group’s per member per month healthcare costs
    were, on average, 12 times that of other enrollees’ at 24
    months


                                                             32
       Costs for High and Low-Risk Samples

 Total costs, per member costs, and per member per month costs for high
 risk* (N = 21) and not high-risk (N = 231) samples

Time Period              Total               Per Member            Per Member Per
                                                                        Month
               High Risk     Not High   High Risk   Not High    High Risk    Not High
                               Risk                   Risk                     Risk

  6 months     $54,493       $91,484     $2,595       $396        $432         $66


 12 months     $203,875      $168,022    $9,708       $727        $809         $61


 24 months     $363,822      $330,846    $17,325     $1,432       $722         $60



* High risk defined as parent reported chronic condition and scoring in lowest PedsQL™
quintile
                                                                                         33
Parent proxy Peds QL ™ & Costs
   Parent proxy-reported PedsQL™ scores can
    be used to prospectively predict healthcare
    costs.
   When combined with chronic health condition
    status, parent proxy-reported PedsQL™
    scores can identify an at risk group of
    children as candidates for proactive care
    coordination and cost containment.


                                            34
Improved Quality of Life
   A standardized assessment of patients’
    QOL is necessary…
   when combined with physician
    knowledge of treatment options and
    referral sources patient functioning and
    quality of life can improve.



                                          35
Future Directions
   Integrating Generic and
    Condition/Disease Specific Instruments
   Item Response Theory Facilitated Items
   Computerized Adaptive Testing




                                        36
                 The End
   Please proceed to the post test
   Download the post test
   Complete the post test
   Return the post test to Dr. Oliver
     407I TAMUII



                                         37
Post Test Question One
1. Child reported quality of life is lowest
   in which of the following diseases?
1. Diabetes
2. CP
3. Cancer
4. Asthma


                                          38
Post Test Question Two
2. Parent-child concordance in PedsQL
    was significant in all diseases except:
1.  Diabetes
2.  CP
3.  Cancer
4.  Asthma


                                          39
Post Test Question Three
3. Children with chronic health conditions
    self reported which of the following
    QOL functional subscale variables
    lowest?
1.  Physical
2.  Psychosocial


                                        40
Thank you




            41

				
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