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

Eur J Med Res. 2001 Feb 28;6(2):85-92.


Although most patients with cystic fibrosis (CF) survive into adulthood, many CF centres are still run by paediatricians. A transition programme from the paediatric CF unit to a newly established CF clinic at the Department of Internal Medicine was carried out for the whole group of patients > or =18 years. We aimed to evaluate our patients' opinion of the transition by analysing the results of two surveys performed before and after the transition. Nine months before the transition, we mailed an anonymous questionnaire. Statements regarding the forthcoming transition were to be answered on scales from 1 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 transition, a second survey with similar questions was carried out.

Results: 44 of 68 patients (65%) aged 18 to 33 years replied to the first and 56% of patients to the second questionnaire. Mean duration of treatment at the paediatric CF centre was 7.5 years (range: 1 to 22 years). Twelve patients each were classified as supporters or opponents of the transition, the remaining patients as intermediates. Older patients and those who had not required hospitalisation during the preceding year had a more positive attitude to the transition (p <0.05). There was a linear relationship between the transition attitude score and the presumed quality of care in the Internal Medicine Department (r = 0.62, p <0.001), but no relation to the quality 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. Thorough training of all staff of the new adult unit and a close co-operation between both departments are pre-requisites to guarantee a smooth transition of all patients.

MeSH terms

  • Adolescent
  • Adolescent Health Services*
  • Adolescent Medicine*
  • Adult
  • Cystic Fibrosis / therapy*
  • Female
  • Health Services Research
  • Health Transition
  • Humans
  • Internal Medicine
  • Male
  • Patient Satisfaction
  • Pediatrics
  • Program Evaluation
  • Surveys and Questionnaires