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 t o adult-oriented health care. Methods: Cross-sectional survey using an anonymous, semi-structured questio nnaire. The study population consisted of adolescents and adults attending a paediatric and an adult CF clinic in Cape Town, South Africa and their pa rents. Results: Forty-seven of the 61 subjects completed the questionnaire (respon se rate 77%). Autonomy in health care was 'extremely important' to most per sons with CF. Transfer at the age of 16-18 years of age was the preferred o ption 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. Ove r 90% fell that a transition clinic would be useful. As viewed by the respo ndents, its main purpose would be to provide information about the adult cl inic and an opportunity to meet the CF doctor in the adult clinic. Conclusi ons: There are significant concerns about the transition process in this po pulation. Given the expressed need for autonomy and a transition clinic, th e basis for a smoother transition in the future has been laid.