Lost in transition? Between paediatric and adult servicesBMJ 2006; 332 doi: https://doi.org/10.1136/bmj.332.7539.435 (Published 23 February 2006) Cite this as: BMJ 2006;332:435
- Janet E McDonagh, ARC senior lecturer in paediatric and adolescent rheumatology (, )
- Russell M Viner, consultant-honorary senior lecturer in adolescent medicine and endocrinology
- Institute of Child Health, University of Birmingham at Birmingham Children's Hospital, Birmingham B4 6NH
- University College Hospital and Great Ormond Street Hospital, London
P reventing adolescents becoming lost in the transfer between paediatric and adult health services is a major challenge for healthcare providers, paediatric and adult alike. Until recently British health services have largely ignored adolescents.1 But as increasing numbers of young people are surviving into adulthood with illnesses they developed in childhood, the need for transitional care appropriate to their age and development is becoming more obvious and acute.2 Adolescence is also a time when adult behaviours become established and therefore represents a window of opportunity to promote healthy behaviour and influence the public health burden of tomorrow's adults.1
Transitional care is a multidimensional, multidisciplinary process that addresses not only the medical needs of adolescents as they move from children's services to adult services but also their psychosocial, educational, and vocational needs. The need for such services has been shown by many surveys of young people with various chronic conditions and their care givers,3–6 and is supported by policy documents in the United Kingdom and United States.2–9 To date, however, there has been a lack of robust evidence3 to support development in transitional care. A recent multicentre trial of a transitional care programme in the UK has begun to address this deficit, with preliminary reports of positive outcomes.10
Although there is no evidence that particular models of transitional care are more effective than others,3 evidence exists to support certain components, including planning and coordination,6 10 opportunities for young people to meet the adult healthcare team who will look after them before the transfer,11 and to be seen independently from their parents or caregivers.12 As well as dealing with medical issues, transitional care also needs to include skills training, including self advocacy and the ability to negotiate services independently; education about general adolescent health issues such as substance abuse, mental health, exercise, and sexual health; educational and vocational issues, particularly career exploration, work experience and disclosure; and parenting issues, particularly learning advocacy for their own children. Young people should not move to adult services until they have the necessary skill set required for them to function effectively in adult services.13 Thus, the provision of developmentally appropriate training and informational resources and assessment of their assimilation by the young person is key. These and other key elements of good practice (the evidence for which is summarised by McDonagh et al10) in moving people from children's to adult services are summarised in the box.
Key elements of transitional care
An early start—When children enter a paediatric service, they should know when they can expect to leave it.
A key worker for each individual
A written transition policy between paediatric and adult services
A flexible policy on timing of events
Skills training in communication, decision making, creative problem solving, assertiveness, self care, self determination, and self advocacy
An education programme for patient and parent which addresses medical, psychosocial, and educational/vocational aspects of care.
A written individualised healthcare transition plan in place by age 14, created with the young person and family, with regular review and update
Administrative support, including provision of a medical summary that is portable and accessible
A training programme in adolescent health and transitional care for paediatric and adult team members
Primary and preventive care involvement and provision
Affordable continuous health insurance coverage (of appropriate) throughout adolescence and adulthood
The key challenges for health services in transition relate primarily to bridging the differing cultures of paediatric, adolescent, and adult health care.11 The concept of adolescent health, which sees young people as resources for their own health, contrasts with the often reactive medical model of adult health care. Paediatrics and adolescent medicine are more focused on the future, emphasising the reciprocal influences of growth and development on health and disease. Other differences include more help with non-adherence, a higher tolerance of immaturity, and a lower threshold for active input into procedural pain management in paediatric and adolescent medicine. Faced with adolescents, adult providers often react in one of two ways: “adolescents are bewildering creatures—we need help” or “adolescents just need to grow up.” Mutual professional respect is integral to successful transition, with acknowledgement of the importance of developmentally appropriate clinical expertise, irrespective of the setting.
The task of developing services which effectively cross these cultures and involve the young person and family as well as professionals from education, social services, and voluntary agencies, all with their differing perspectives and anxieties, should not be underestimated. Teaching about adolescent health will need to start at undergraduate level. Fortunately transitional care itself provides a useful model for teaching team and interagency working, age and developmentally appropriate care, and the importance of sociocultural influences on health.
In Britain the lack of well developed further training in adolescent health care6 presents an additional challenge, in contrast to North America and Australia. A recent staff survey in a leading children's hospital, where at least a third of current patients are in the adolescent age group, found that 60% of respondents reported having no formal training in adolescent health.12 The need for training is currently being addressed by the Department of Health and the royal colleges.
The host of issues facing adolescents with chronic conditions that are not specific to their particular illness13 supports generic, inter-specialty developments in transitional care. While additional resources will be necessary, changes in attitude and behaviour are also important and cost nothing. In view of the increasing numbers of survivors of childhood chronic illness, there is now an urgent need for developments in service, training, and research in transitional care, so that all young people can meet their full adult potential.
Competing interests None declared.