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 highquality care has
NOT been
realized”
Pediatrics 2011
Are we asking the right
question?
How can we best manage
transition?
Vs
It’s not about [arthritis] –
it’s about living with it
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.
Data systems
Transition
coordinators
Risk &
protective
factors
Parents
Peer
influences
Training for paediatric
& adult professionals
Healthcare systems
& training structures
Principles
of Adolescent
Medicine
Psychosocial
screening
T
Confidentiality
Info and resources
Longer appointments
Understanding health
condition
Adherence
Selfmanagement
Managing
of
Health
chronic
condition
disease Growing capacity
for self-care
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
Psychological
Social
Educational
Vocational
Eg: Cystic fibrosis Post transfer
• NO change in clinical status
BUT
 Young people NOT in
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
Similar odds:
• Marriage
• Having children
• Living with parents
• Romantic relationship
quality
Lower odds
• Graduating college
• Being employed
Higher odds
• Public assistance
• Lower income
Maslow GR et al 2011
Transition Taster
Summary
• Evidence
• Models
• Core
components
• Evaluation
Data systems
Transition
coordinators
Risk &
protective
factors
Parents
Peer
influences
Training for paediatric
& adult professionals
Healthcare systems
& training structures
Principles
of Adolescent
Medicine
Psychosocial
screening
T
Confidentiality
Info and resources
Longer appointments
Understanding health
condition
Adherence
Selfmanagement
Managing
of
Health
chronic
condition
disease Growing capacity
for self-care
Promoting
autonomy (Kennedy A & Sawyer SM 2008)
j.e.mcdonagh@bham.ac.uk