Transition of adult patients with cystic fibrosis from paediatric to adultcare - The patients' perspective before and after start-up of an adult clinic

Although most patients with cystic fibrosis (CF) survive into adulthood, ma ny CF centres are still run by paediatricians. A transition programme from the paediatric CF unit to a newly established CF clinic at the Department o f Internal Medicine was carried out for the whole group of patients greater than or equal to 18 years. We aimed to evaluate our patients' opinion of t he transition by analysing the results of two surveys performed before and after the transition. Nine months before the transition, we mailed an anony mous questionnaire. Statements regarding the forthcoming transition were to be answered on scales from I to 4, and the patients had to check a list of adjectives describing the current treatment in the paediatric CF centre as well as the presumed care in the adult unit. Fifteen months after the tran sition, a second survey with similar questions was carried out. Results: 44 of 68 patients (65%) aged 18 to 33 years replied to the first a nd 56% of patients to the second questionnaire. Mean duration of treatment at the paediatric CF centre was 7.5 years (range: I to 22 years). Twelve pa tients each were classified as supporters or opponents of the transition, t he remaining patients as intermediates. Older patients and those who had no t required hospitalisation during the preceding year had a more positive at titude to the transition (p < 0.05). There was a linear relationship betwee n the transition attitude score and the presumed quality of care in the Int ernal Medicine Department (r = 0.62, p < 0.001), but no relation to the qua lity of present paediatric care (r = -0.09, p = 0.59). In the second survey , patients rated the quality of care in the adult CF unit better than prior to the transition. Conclusions: The transition from paediatric to a newly established adult CF centre was accepted by most adult CF patients. Thoroug h training of all staff of the new adult unit and a close co-operation betw een both departments are pre-requisites to guarantee a smooth transition of all patients.