Transition from paediatric to adult care for persons with cystic fibrosis: Patient and parent perspectives

Objectives: To gauge the perspectives of adolescents and adults with cystic fibrosis (CF) and their parents regarding the transition from paediatric to adult-oriented health care. Methods: Cross-sectional survey using an anonymous, semi-structured questionnaire. The study population consisted of adolescents and adults attending a paediatric and an adult CF clinic in Cape Town, South Africa and their parents. Results: Forty-seven of the 61 subjects completed the questionnaire (response rate 77%). Autonomy in health care was 'extremely important' to most persons with CF. Transfer at the age of 16-18 years of age was the preferred option for most respondents. Whereas over 80% of parents felt their children needed more CF-related information, only 38% of adolescents expressed this need (P < 0.05). Adolescents also reported little need for general health information. More than 80% of respondents were 'unsure' about transfer. Over 90% fell that a transition clinic would be useful. As viewed by the respondents, its main purpose would be to provide information about the adult clinic and an opportunity to meet the CF doctor in the adult clinic. Conclusions: There are significant concerns about the transition process in this population. Given the expressed need for autonomy and a transition clinic, the basis for a smoother transition in the future has been laid.