janet e mcdonagh [email protected] senior lecturer in paediatric and adolescent rheumatology,...
TRANSCRIPT
Janet E [email protected]
Senior Lecturer in Paediatric and Adolescent Rheumatology, Birmingham Children’s Hospital & University of Birmingham
Growing Up Ready, Moving On Well:The ongoing challenge of transitional care
Transitional care is Growing Up in the UK!
www.dh.gov.ukwww.transitioninfonetwork.org.uk
NHS Children’s Review 2010 (UK)
• “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
“Transition - long the cause of complaint and unhappiness”
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?
Vs
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.
It’s not about [arthritis] – it’s about living with it
Shaw KL et al 2004
TPrinciples
of Adolescent Medicine
Healthcare systems& training structures
Self-management
of chronic disease
Training for paediatric& adult professionals
Info and resources
Longer appointments
Adherence
Understanding health condition
ManagingHealth
condition
Growing capacity for self-care
Promoting autonomy
ConfidentialityPsychosocial
screening
Peer influences
Parents
Risk & protective
factors
Transitioncoordinators
Data systems
(Kennedy A & Sawyer SM 2008)
Transition TasterOutline
• 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
programmesMost 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 TasterOutline
• Evidence • Models and
core components
• Evaluation
Transitional CareComplex! – 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 Skillsand Transition Readiness
n=954 12-19 year olds with chronic conditionsWeb-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 TasterOutline
• 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 2010Generic• TRAQ Transition Readiness
Assessment QuestionnaireSawicki 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 statusBUT 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=132365% 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 TasterSummary
• Evidence • Models • Core
components• Evaluation
TPrinciples
of Adolescent Medicine
Healthcare systems& training structures
Self-management
of chronic disease
Training for paediatric& adult professionals
Info and resources
Longer appointments
Adherence
Understanding health condition
ManagingHealth
condition
Growing capacity for self-care
Promoting autonomy
ConfidentialityPsychosocial
screening
Peer influences
Parents
Risk & protective
factors
Transitioncoordinators
Data systems
(Kennedy A & Sawyer SM 2008)
