Principles of Good Transition Care – developing the essential link between paediatric and adult care Chris Kelnar Chair, RCPE Transition Steering Group Professor of Paediatric Endocrinology Section of Child Life and Health University of Edinburgh

Setting the scene… >90% of children with chronic illness now reach adulthood Major potential impact on achievement of developmental milestones Puberty heralds increases in the prevalence of mental health problems and substance misuse

What is transition? Adolescence: “A painful passage o’er a restless flood” (William Cowper, 1731-1800) Transition: “A purposeful, planned process that addresses the medical, psychosocial and educational needs of adolescents…with chronic physical and medical conditions as they move from child centred to adult oriented health care systems.” (Society for Adolescent Medicine 2003)

Evidence / examples of good practice Young people’s health with chronic illnesses deteriorates and their engagement with health services lessens around the time of transfer to adult services (McDonagh DoH 2006; Nakhla et al JPEM 2008) Liaison between paediatric and adult services has evolved by serendipity or through the enthusiasm of individuals

http://www.rcpe.ac.uk/clinical-standards/guidance/transition-medicine.php Better Health, Better Care: Hospital Services for Young People in Scotland http://www.Scotland.gov.uk/Publications/2009/05/07130749/0

Why is guidance needed? Bridging the gap between paediatric and adult health care How best to treat the increasing number of young adults surviving serious childhood diseases….

Generic Issues Core principles Education and independence Ethical issues Inequalities in health Remote and rural issues Fertility and sexual health

Core Principles for Transition – 1 Transition is not synonymous with transfer – it must begin early and be planned carefully Successful transfer as the culmination of a period of planned transition care A transition programme should allow flexibility in relation to the specialty, hospital or team Each hospital should have a transition policy setting down the principles of transition from paediatric to adult healthcare Ages at final transfer will vary, but it normally should take place in the late teens

Core Principles for Transition – 2 The transition process should extend beyond the day of discharge/transfer from paediatric services, with ongoing care received in the adult sector being of equivalent quality and intensity Adult healthcare professional involvement may improve patient satisfaction, clinic attendance and / or health outcomes The transition process should address specific health problems and how they affect the young person’s social, psychological, educational and employment needs and opportunities Young people must be involved in developing their transition programme to enhance their sense of control and independence

Education and Independence For young people Knowledge about their disorder / self-management skills / other related life issues (housing / employment / benefits etc) Dedicated education sessions For parents / carers Changing status with autonomy - “letting go” / adult service provision For healthcare professionals Complexity of transition (medical / maturational / educational)

Ethical Issues Beneficence and non-maleficence Justice justice1 – society’s benefits and burdens (including health care interventions) should be distributed equitably in the population justice2 – cases that are alike, in relevant respects, should be treated similarly; cases that are different, in relevant respects, should be treated differently Respect for autonomy When and how to enter transition and achieve autonomy Confidentiality and ethical dilemmas

Health Inequalities Impacts of deprivation and / or social exclusion Train staff to identify those at high risk Transition co-ordinator (“Key worker”) Young people and their families actively involved Cultural mediators (ethnic minority / traveller /gypsy communities) Communication between services and 1ry / 2ry care Develop adult services where ‘none’ exist (e.g. neurodisability)

Remote and Rural Issues

Sexual Health and Fertility Risks of pregnancy / fear of infertility When / how to explain condition and its implications to boy- or girl-friends Contraceptive advice Contexts for gynaecology services

Exemplar conditions – patient-specific issues (1) Cystic fibrosis Joint clinics seeing patients together Advance handover of comprehensive medical records Stressful! Patient empowerment often unsettles parents Chronic renal disease Individual assessments and planning Vocational / career provision discussions Information packs about adult services / visits to adult facilities Buddy system Formal process to say “goodbye”

Exemplar conditions – patient-specific issues (2) Type 1 Diabetes Mellitus Shared philosophy of care between children’s and adult teams Specific local protocols transfer at a time of relative health stability Easy access to psychological support Age-banded clinics for young adults Age of transfer should depend on physical and emotional maturity as well as on local circumstances

Exemplar conditions – patient-specific issues (3) Long-term Survivors of Cancer Multidisciplinary team in age-appropriate environments Risk stratification of follow-up needs “Late effects” nurse specialist for support and co-ordination Active engagement of young people in their care plans

Recommendations – 1 Young people should be given the opportunity to be seen without their parents Transition services must address the needs of parents / carers, whose role in their child’s life is evolving at this stage Transition services must be multidisciplinary and multi-agency Optimal care requires that a sound co-operative working relationship is developed between adult and paediatric services, particularly where the young person has complex needs with multiple specialty involvement

Recommendations – 2 The co-ordination of transitional care is critical, requiring an identified co-ordinator (‘key worker’) who supports the young person until he or she is settled within the adult system. This could be an adolescent nurse specialist, transition co-ordinator, community nurse, youth worker, etc Young people should be encouraged to take part in transition / support programmes and / or put in contact with other appropriate youth support groups The involvement of adult physicians prior to transfer supports attendance and adherence to treatment Transition services must undergo continued evaluation – no one model fits all

Where next? – 1 Young people have a right to expect accessible, age-appropriate services and high quality healthcare at every stage in their patient journey Development of clear transition policies within local health plans Creating descriptions of local adolescent services for young people, their families and healthcare professionals Targeting research efforts into different models of care, with particular emphasis on addressing the inequalities challenge, and delivery of support to young people living in remote and rural areas

Where next? – 2 Promoting good practice for early adoption by other teams, particularly where there is limited reliable research evidence Seeking appropriate outcome measures to assess the impact of changing models of care Adding an awareness of the special needs of young people to all health-related education curricula and training programmes Developing specialist training for the emerging roles in adolescent medicine

Make It Happen: Challenges (1) Delivery of high quality age-appropriate health care: patient-centred, structured, consistent, well-understood Universal needs – but practical service restructuring / development, and resource implications, will vary between specialties, clinics and healthcare systems Challenges of inequalities and delivery of support in / to remote and rural areas Importance of multiagency (including education and employment), as well as multidisciplinary, working and communication

Make It Happen: Challenges (2) Identifying key workers, who may be from a variety of disciplines / backgrounds, who make a positive difference to families’ experiences of healthcare especially when needs are complex Delivery of high quality care as locally as possible ‘Marginalised’ groups (ethnicity, deprivation, social exclusion, mental/physical handicap) Lack of some key adult services To embed transition care as a key part of adolescent health provision

The goals… The time of transfer to adult services should be the culmination of a period of planned and coordinated transition care and guided by the choice and physical, emotional and social maturity of the young person To embed transition care as a key part of adolescent health provision