Original article
Transition of patients with inflammatory bowel disease from pediatric to adult careTransition vers le gastroenterologue d’adultes des enfants suivis pour une maladie inflammatoire chronique intestinale

https://doi.org/10.1016/j.gcb.2008.01.044Get rights and content

Summary

Aim

This study was designed to ascertain the perception of patients (and their parents) followed-up for inflammatory bowel disease (IBD) concerning the transition from pediatric to adult care.

Patients and methods

Forty-eight youths with IBD who had transited from pediatric to adult care were surveyed. Their age at transition was 17.9 ± 0.9 years. Thirty-four patients (71%) had been referred to a gastroenterologist working in the same hospital and, in 27 cases, after having attended a joint pediatric–adult care visit.

Results

The response rate was 71%. Twenty-nine patients (85%) and 25 parents (74%) felt they were ready to transit into adult care. Seven patients (22%) and 10 parents (32%) were apprehensive about transition to adult gastroenterology. All patients considered the joint medical visit beneficial in terms of transmitting information from their medical records and 93% considered it beneficial for building confidence in the new gastroenterologist. All parents considered the joint medical visit helpful for building the children's confidence in their new doctor. At the time of the survey, 29 patients (85%) were continuing to be followed-up by the same gastroenterologist.

Conclusion

Effective planning, including a joint medical visit, enabled successful, well-coordinated transition to adult medical-care follow-up.

Résumé

Objectif

Évaluer le vécu des patients suivis pour maladie inflammatoire chronique intestinale, ainsi que de leurs parents, lors de la transition entre pédiatrie et médecine d’adultes.

Patients et méthodes

Quarante-huit enfants devenus adultes et désormais suivis par un gastroentérologue d’adultes ont été inclus. L’âge lors de la transition était de 17,9 ± 0,9 ans. Trente-quatre patients (71 %) ont été confiés aux gastroentérologues du même hôpital, 27 fois au cours d’une consultation commune pédiatre–gastroentérologue.

Résultats

Le taux de réponses était de 71 %. Vingt-neuf patients (85 %) et 25 parents (74 %) se sentaient prêts pour le passage en médecine d’adultes. Sept patients (22 %) et dix parents (32 %) l’appréhendaient. Tous les patients ont jugé la consultation commune bénéfique pour la connaissance du dossier et dans 93 % des cas bénéfique pour la confiance accordée au nouveau référent. Tous les parents ont jugé la consultation commune bénéfique pour la confiance accordée par leur enfant au nouveau référent. Vingt-neuf patients (85 %) étaient toujours suivis par le même gastroentérologue d’adultes. L’organisation de la transition et en particulier la consultation commune pédiatre–gastroentérologue ont permis d’assurer la poursuite de soins de façon coordonnée et sans rupture.

Introduction

In Brittany, the annual incidence of inflammatory bowel disease (IBD) in the pediatric population is 1.6 per 100,000 for Crohn's disease and 0.5 per 100,000 for ulcerative colitis. IBD had begun before 17 years of age in 6.7% of these children [1]. Since IBD is a chronic illness, these patients will eventually move from pediatric to adult care, requiring the involvement of ‘referring’ pediatric and ‘referral’ adult-care physicians, as well as the adolescents themselves and their families. All of these healthcare partners have to participate in a careful examination of both the risks of the transition and the practical procedures involved. The extensive body of literature devoted to this problematical issue includes reviews and guidelines proposed by various learned societies [2], [3], [4], [5], [6], but no ‘real-life’ survey of adult patients who made the transition from pediatric to adult care.

Since 1992, the pediatric gastroenterology unit at the Rennes University Hospital Center has arranged for a joint medical visit for pediatric patients with IBD scheduled for transition to adult care within the center. The patients and their parents (on their request) are invited to attend a joint visit with the pediatric and adult gastroenterologists before making the transition. The purpose of the present study was to learn more about the way patients and their parents perceived this experience as a function of transition to adult-care gastroenterology.

Section snippets

Patients and methods

Since 1992, IBD pediatric patients who reach adulthood have been invited to transfer their subsequent care to the adult gastroenterology unit of the same University Hospital Center or to another practitioner. When patients express their desire to stay within the same center, a one-hour joint visit is scheduled in the adult-care gastroenterology unit to plan for further follow-up. This consultation is conducted by both the pediatric physician currently in charge of the patient and the adult-care

Circumstances of the transition

The mean patient age at transition was 17.9 ± 0.9 years (median: 18; range: 15.5–20.5). The transition was later in one patient (aged 20.5 years at transition) because of disease-related retardation of growth and puberty. Forty-six patients had completed puberty by the time of transition. These data were missing for two patients.

At the time of transition, 26 patients were in secondary school and 11 in higher education; failing in school was noted in two patients and was disease-related in one

Discussion

Like other chronic diseases beginning in childhood, IBD eventually requires transition from pediatric to adult care [2], [3], [4], [5], [6]. ‘Successful’ transition enables uninterrupted coordinated care that is well-adapted to the patient's development and maturity both before and during the transition and probably contributes to better patient compliance to medical care in adulthood. The guidelines proposed by expert societies increasingly urge pediatric gastroenterologists to develop a

Conclusion

For pediatric patients at the Rennes University Hospital Center with IBD, transition from pediatric to adult care appears to have been a successful experience, allowing them to continue their coordinated care without interruption. Careful consideration of the developmental and growth phases of each individual patient, discussions among the pediatric physician, the patient and his family that anticipate the transition several years ahead of time, the development of joint visits since 1992 and

References (16)

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