Bridging the Gap Transitional Care for adolescents with chronic by 86k2ZOX1

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									   Growing Up Ready, Moving On Well:
The ongoing challenge of transitional care




                         Janet E McDonagh
                     j.e.mcdonagh@bham.ac.uk
    Senior Lecturer in Paediatric and Adolescent Rheumatology,
    Birmingham Children’s Hospital & University of Birmingham
 Transitional care is
Growing Up in the UK!




www.dh.gov.uk
www.transitioninfonetwork.org.uk
      “Transition - long the cause
     of complaint and unhappiness”

• “Critical area” for service
  improvement as existing abrupt
  transfers are failing to meet
  young people’s needs

Called for:
• Discrete funding
• Shift in focus
towards the needs of the YP and
  away from “bureaucratic
  barriers” between paediatric
  and adult care
                             NHS Children’s Review 2010 (UK)
  American Academy of Pediatrics
“After nearly a
  decade of effort,
  widespread
  implementation of
  health transition
  supports as a basic
  standard of high-
  quality care has
  NOT been
  realized”             Pediatrics 2011
Are we asking the right
question?
How can we best manage
transition?
                               It’s not about [arthritis] –
                                 it’s about living with it
Vs                                Shaw KL et al 2004



How best can we meet the needs
of young people with chronic
conditions at this stage of the life
course?
               Allen D & Gregory J 2009.
                          Training for paediatric
                           & adult professionals
          Data systems                              Info and resources

      Transition                                     Longer appointments
     coordinators        Healthcare systems
                         & training structures
   Risk &
                                                     Understanding health
 protective
                                                          condition
   factors


                                  T
                                                                Adherence
Parents                                      Self-
                Principles                management
                                                         Managing
              of Adolescent                   of          Health
    Peer         Medicine                  chronic       condition
 influences
                                            disease Growing capacity
   Psychosocial                                            for self-care
    screening       Confidentiality    Promoting
                                        autonomy (Kennedy A & Sawyer SM 2008)
       Transition Taster
           Outline
• Evidence
• Models and core
  components
• Evaluation
Evidence of Need
  Evidence of Need
for Transitional Care
E.g.
• Survival
• Disease outcomes
• Morbidity
• Developmental delay
• Loss to follow-up
• What young people and
  their families say
              Evidence of Need
5th UK Paediatric Diabetes Survey
• 76% clinics had a transition
   “protocol”
BUT
• 21% transfer letter only
                Gosden C et al 2010

• NO transition planning process in
  at least 50% programmes
     Lam PY 2005; Robertson LR, 2006;
  McLaughlin SE 2008; Hilderson D 2009
    Evidence of effectiveness of
    transitional care programmes
Most commonly used strategies in successful
  programmes:
• Patient education and skills training
• Specific clinics
– Combined paediatric and adult
– Dedicated young adult clinics within adult services

Potential:
– Transition coordinators
– Enhanced follow-up
              Crowley R et al 2011 (systematic review)
   Conditions for successful transition
    from perspective of young people

• Meaning given to transition by patients
• Expectations about transition and the
  adult centred care environment
• Level of knowledge and skills
• Transition planning
• Environment

   Lugasi T et al 2011 (Theory Integrated Metasummary)
      Transition Taster
          Outline
• Evidence
• Models and
  core
  components
• Evaluation
            Transitional Care
Complex! – intervention, context, system

Models
• Sequential
(reflects adolescent development)
• Developmental
(eg disability, cognitive impairment)
• Professional-centred
• Direct

                           While A et al 2004
    Transfer (minus transition!)
    •   Age out
    •   Drop out ( non-SHCN)
    •   Forced out
    •   Hang out ( SHCN)
    •   Move out ( non-SHCN)
    •   Transfer out

                        Burke R et al 2008

*SHCN = special health care need
Effective Models of Transition
  Systematic review of evidence of effectiveness of
    transitional care programmes (11-25 years)

  • Combined paediatric & adult clinic:
    8 studies, 3 successful

  • Young adult clinic
  – 4 studies, 3 successful

                                  Crowley R et al 2011
     Young Adult Team Approach
        eg physical disability

• No more expensive than
  ad hoc services

• Associated with better
  participation of young people
  in society (2.54 x)

Bent N 2002
      Core Components: People
•   Champions!
•   A Coordinator
•   Interested and capable adult team
•   Primary health care
•   Social care
•   Education/vocational agencies
•   Young People & their families
      Core Components: Process
•   Written Policy
•   Knowledge and Skills* Framework
•   Individualised young person centred
    planning process
•   A young person friendly service
•   Staff training
•   Administrative support inc tracking
    mechanisms
•   Evaluation and audit
          Self-management Skills
         and Transition Readiness
n=954
12-19 year olds with chronic conditions
Web-based questionnaire

48% of total variance in Tn Readiness explained
• Perceived self-efficacious in skills for independent
  hospital visits
• Perceived independence during consultations
• Attitude towards transition
• Discussion re transition
                                     Van Staa A et al 2011
      Time Alone and Transition
• Considered “Best practice and feasible” by YP
  with JIA, parents and health professionals
                              Shaw KL et al, 2004
• Baseline predictor of improvement in HRQoL
                         McDonagh JE et al 2007
• Determinant of attendance at 1 adult clinic
  appointment
                              Reid GJ et al, 2004
• Only 30% (n= 311 paediatric) and 60% (n= 128
  adult) young people seen alone by Dr
                         (McDonagh 2011 in prep)
               Staff Training
• Best Practice – but only
  feasible in a few UK
  hospitals:
Professionals knowledgeable
  in transitional care
Shaw KL et al, 2004

• Lack of training: Main
  barrier to delivery of
  transitional and/or
  adolescent health care
McDonagh JE 2004, 2006;
 Dieppe C 2008                www.e-lfh.org.uk
    Transition Taster
        Outline
• Evidence
• Models and core
  components
• Evaluation
              Transition Tools
Condition specific
• Rotterdam Transition Profile (CP)
     Donkervoort M et al 2008
• TRS Transition Readiness Survey
  (Liver Transplant)
          Fredericks EM et al 2010
Generic
• TRAQ Transition Readiness
  Assessment Questionnaire
              Sawicki G et al, 2009
• Self-Management Skills
  Assessment Guide
              Williams T et al 2011   Shaw KL 2007
                Transition
            Outcome Measures
•   Medical         Eg: Cystic fibrosis Post transfer
•   Psychological   • NO change in clinical status
•   Social          BUT
•   Educational      Young people NOT in
•   Vocational         school/job
                    7.9% pre vs 31.5% post
                                  Dugueperoux I et al 2008


                    • JIA: Significant improvement
                      in vocational readiness with
                      transitional care
                            McDonagh JE et al 2007
          Social success,
  educational/vocational distress
        and chronic illness
24-32 year olds, n=13236
5% with chronic illness    Lower odds
                           • Graduating college
Similar odds:              • Being employed
• Marriage
• Having children          Higher odds
• Living with parents      • Public assistance
• Romantic relationship    • Lower income
  quality                   Maslow GR et al 2011
      Transition Taster
          Summary
• Evidence
• Models
• Core
  components
• Evaluation
                          Training for paediatric
                           & adult professionals
          Data systems                              Info and resources

      Transition                                     Longer appointments
     coordinators        Healthcare systems
                         & training structures
   Risk &
                                                     Understanding health
 protective
                                                          condition
   factors


                                  T
                                                                Adherence
Parents                                      Self-
                Principles                management
                                                         Managing
              of Adolescent                   of          Health
    Peer         Medicine                  chronic       condition
 influences
                                            disease Growing capacity
   Psychosocial                                            for self-care
    screening       Confidentiality    Promoting
                                        autonomy (Kennedy A & Sawyer SM 2008)
j.e.mcdonagh@bham.ac.uk

								
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