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

NHS Children’s Review 2010 (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

It’s not about [arthritis] – it’s about living with it 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

Training for paediatric & adult professionals Data systems Info and resources Transition coordinators Longer appointments Healthcare systems & training structures Risk & protective factors Understanding health condition T Adherence Parents Self- management of chronic disease Principles of Adolescent Medicine Managing Health condition Peer influences Growing capacity for self-care Psychosocial screening Promoting autonomy Confidentiality (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 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 www.e-lfh.org.uk 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 Shaw KL 2007 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 National Long. Study of AH wave 3

Transition Taster Summary Evidence Models Core components Evaluation

Training for paediatric & adult professionals Data systems Info and resources Transition coordinators Longer appointments Healthcare systems & training structures Risk & protective factors Understanding health condition T Adherence Parents Self- management of chronic disease Principles of Adolescent Medicine Managing Health condition Peer influences Growing capacity for self-care Psychosocial screening Promoting autonomy Confidentiality (Kennedy A & Sawyer SM 2008)

j.e.mcdonagh@bham.ac.uk