Transition and transfer of young people with cystic fibrosis to adult care

Abstract

Treatment for cystic fibrosis (CF) remains arduous and time-consuming, with young people in particular struggling to balance these demands with living a 'normal' life. Transferring to adult services is an important milestone that should be preceded by a gradual process of empowerment. This service evaluation aimed to explore the views of young people with CF before their transfer to adult care and to co-produce revisions to the transition and transfer programme. A total of 37 participants, aged 11-17 years, completed questionnaires during routine clinic visits with 81% expressing good knowledge of CF and treatment, and 59% reporting that they undertook their own treatment. Only 40% had seen a doctor alone for part of their clinic visit, 64% supported recruitment of a youth worker and 48% viewed dedicated adolescent clinics as beneficial. Participants expressed overall satisfaction with their care, however, improvements were suggested. Based on these suggestions, funding was secured for a youth worker, 'transition' clinics were established with children's and adult CF team members, and doctors started seeing young people on their own for part of the clinic visit from age 13 years.

Keywords: adolescents; child health; cystic fibrosis; lung diseases; young people.