Transition of adolescents with cystic fibrosis from paediatric to adult care

Abstract

Transition to adult health care for adolescents with complex chronic illness such as cystic fibrosis (CF) is a challenge for the health care system with increasing numbers of young people requiring lifelong adult health care due to improvements in early diagnosis, treatment and survival. The changing face of CF and current guidelines for transition to adult care will be reviewed with a discussion and case study illustrating effective transition. Key features include (i) early preparation, planning and facilitating self-management skills; (ii) engaging all involved by a coordinated approach, including young people with CF, their families and the paediatric and adult teams; (iii) detailed communication, including comprehensive written referral report and documentation of prior complications of CF; (iv) feedback between the paediatric and the adult health care teams; and (v) ongoing audit of the transition process. The barriers to effective transition will be examined in the context of challenges faced by the paediatric centres, the development and resourcing of appropriate adult services, difficulties for the young person and their family as well as integrating the health care system overall. While acknowledging the development and evaluation of models of care for transition services with CF, continued evaluation of transition services can provide an evidence base to ensure effective systems with allocation of resources, inform training of health professionals and meet the needs of young people with CF and other chronic illnesses as they navigate the health care system.