Articles
A model for transition from pediatric to adult care in cystic fibrosis*

https://doi.org/10.1053/jpdn.2002.126711Get rights and content

Abstract

With improved medical technology, many chronic medical conditions of childhood are now recognized as conditions of childhood onset. Appropriate treatment of these conditions in the adult patient is required. The pediatric setting is not appropriate in terms of philosophy, service delivery, and relationship with the patient. To design a suitable transition protocol, a survey of teenage patients with cystic fibrosis was carried out and the process was discussed with the relevant clinicians. The results of the survey indicated that young people identified transition to an adult service as necessary and accepted, provided that good preparation is given from the pediatric setting. This article provides a detailed example of a model of transition for cystic fibrosis services to encourage practice and evaluation of provision. Copyright 2002, Elsevier Science (USA). All rights reserved.

Section snippets

Why is transition necessary?

It may be useful to establish what is meant by transition. Why not use the term “transfer”? Could it be a better description of what actually happens, the handover of care of a patient from one medical practitioner to another? The Oxford English Dictionary defines transfer as “convey, remove, handover, move” whereas transition is defined as “passage or change from one place, or state, or set of circumstances to another.” We would argue that the anxieties on the part of the pediatrician, parent,

Differences between the services

Adult health services focus their contact with the patient, not the parents, and consideration is given to work and family commitments. The staff members in adult teams expect their patients to have autonomy for their health and so treatment decisions are likely to be collaborative. Adult services expect that adult patients will be independently able to care for themselves and be capable of negotiating the hospital system. Pediatric services are prescriptive and nurturing, whereas adult

Barriers to transition

Why is transition from pediatric to adult care met with resistance? As professionals working within pediatrics and as users of the adult health care system, we may recognize and acknowledge the necessary differences in the services. For families with sole experience of the pediatric setting the differences may be incomprehensible and very frightening. Pediatric care has developed a family-centered philosophy with active involvement from the child and parents in planning treatment regimens and

Survey of teenage patients

Before designing a transition program it was decided to establish a baseline of the current issues regarding transition to adult care and identify the strengths and needs of such a program. We therefore surveyed a sample of 21 teenage patients attending the Cystic Fibrosis Centre (Great Ormond Street Hospital for Children). The questionnaire was devised by the authors based on experience and a review of the current literature. The questionnaire was self-completed, requiring agreement on a

Summary of findings

These teenagers were relatively well at the time of questioning and were old enough to have given the issue some thought. The majority felt that transition should occur somewhere between the ages of 14 and 19 years of age and that it was a serious matter (52%) warranting time spent on planning (91%) with discussion from all available sources and involvement from themselves (81%). Although recognizing that transition was important, 62% felt unconcerned about the process and 61% felt that their

Model of transition

Despite literature recommending the process of transition from pediatric to adult care, there is not much practical advice available. This model is offered as an example that can be adapted to suit local practice (Table 4).

. Transition program

Key ConceptsContent
CoordinationThe coordinators in the transition program are the clinical nurse specialists. Their role is to identify all children approaching the age of transition, book transition clinic appointments, and ensure the families receive

Conclusion

Changing the management of long-term health care from a pediatric to an adult setting should be regarded as much a right of passage as leaving school and starting work—and just as important. The adult CF population in the UK is increasing, as are many chronic disease populations; this problem is not going away rather it is becoming an issue that we need to recognize and address urgently. Current adult CF centers are becoming overburdened and it is our responsibility as professionals, as much as

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*

Address correspondence and reprint requests to: S. Madge, Department of Cystic Fibrosis, Royal Brompton Hospital, Sydney Street, London SW3 6NP, United Kingdom. E-mail: [email protected].

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