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What happens to the adolescent patient with a chronic disorder at the age of 16? At present the main options are transfer to adult services, long-term retention in the paediatric clinic or discharge from hospital supervision. Transfer of patients, when it occurs, is often done in a haphazard way. Reasons for transfer include leaving school, the patient's embarrassment at attending a paediatric clinic, and pregnancy. Probably the worst reason of all is non-adherence to treatment—the so-called punishment transfer, used as a weapon of last resort when dealing with the poorly cooperating teenager.
Simple transfer or discharge will seldom be the best option; what most patients need is an efficient and gradual transition from paediatric to adult services. To achieve effective transition, two principles must be recognized—first, that transition in healthcare is only one part of the wider evolution from dependent child to independent adult; second, that the change from paediatric to adult healthcare systems is difficult not only for those with chronic disease but even for normal young people. Many young adults neglect to register with a general practitioner and drop out of the healthcare system, seeking help only in crises that might sometimes have been avoided by regular contact and health promotion.
For this reason, special transition programmes have been set up for adolescents with a wide variety of chronic disorders such as diabetes, cystic fibrosis and arthritis. One barrier to effective transition is the reluctance of some paediatric professionals to ‘let go’ and trust either the independence of the adolescent or the skills of the adult services; and parents may be reluctant to let go for the very same reasons. These uncertainties are bound to undermine the adolescent's confidence in the competence and commitment of staff in adult services. A common obstacle to successful transition is the loss of respected and trusted paediatric carers who must now be traded for new and unknown carers in an adult service. Transfer to an adult service may also be seen as representing a step closer to disease complications and death, especially for teenagers with diabetes or cystic fibrosis1. Thus there is often little incentive for adolescents to abandon a service that has served them well for many years.
Commonly, adult services themselves present obstacles to successful transition. One of the biggest is the complete lack of an adult specialist service in the locality: for example, though paediatric services for cystic fibrosis are well provided, most districts in the UK do not offer a service for adults, and some patients must travel long distances to regional centres. Other obstacles to transition include a lack of interest by adult physicians in ‘paediatric’ diseases of adult life, busy clinics full of elderly sick patients, poor communications and contradictory advice.
What can be done to improve matters? In the UK a serious deficiency is the dearth of hospital facilities for adolescents—hence a sharp cut-off between paediatric and adult care at the age of 16. One effect of this forced transition at 16 is that a second transition may occur at 18 or 19 when the young adult moves away from home and goes to college or university. General principles of optimum transition are as follows:
Transition to adult care is a major life event for young people with chronic illness. The lack of appropriate adolescent facilities—for example, adolescents being housed on paediatric wards in the company of young babies or on adult wards with very elderly patients—and the lack of healthcare staff skilled in meeting the needs of adolescents, are currently obstacles to efficient transition in the UK4. For the reader who wishes to explore the subject further, this topic is discussed in published papers from the most recent Section of Paediatrics symposium on cystic fibrosis5,6,7,8.