Moving on from paediatric to adult health care: an initial evaluation of a transition program for young people with cystic fibrosis.

BACKGROUND AND
OBJECTIVE: Although there are general guidelines for adolescents with chronic illnesses making the transition from paediatric to adult health care, there are few studies which evaluate transition programs. This cross-sectional study was a preliminary evaluation of a transition program for young people with cystic fibrosis. Study group and methods: A self-administered questionnaire was completed by a group of 'pre-transition' adolescents and their parents who had not moved on to adult health care and a 'post-transition' group who had moved on from the Children's Hospital at Westmead over a six year period. The questionnaire examined patient and parent concerns about adult health care, participation in steps of the transition process, satisfaction with transition and health related quality of life. Measures of disease severity (lung function tests and body mass index) were also included.
RESULTS: 137 out of 220 (62%) eligible participants completed the questionnaire. In the pre-transition group, parents had more concerns compared to young people. There was no evidence of a significant difference between pre-transition and post-transition young people regarding degree of concern. Most people were satisfied with the transition program and posttransition patients and parents who completed more steps in the transition program described the overall transition process more positively. There was no evidence of a relationship between amount of participation in transition and measures of disease severity or quality of life.