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

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

Grace Bowmer Assistant psychologist, Paediatric Psychology Service, Leeds Teaching Hospitals NHS Trust, Leeds, England
Carol Sowerby Clinic nurse, Regional Paediatric CF Unit, Leeds Teaching Hospitals NHS Trust, Leeds, England
Alistair Duff Consultant clinical psychologist and honorary clinical associate professor, Department of Clinical and Health Psychology, Leeds Teaching Hospitals NHS Trust, St James’ University Hospital, Leeds, England

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.

Nursing Children and Young People. doi: 10.7748/ncyp.2018.e1080

Citation

Bowmer G, Sowerby C, Duff A (2018) Transition and transfer of young people with cystic fibrosis to adult care. Nursing Children and Young People. doi: 10.7748/ncyp.2018.e1080.

Peer review

This article has been subject to open peer review and has been checked for plagiarism using automated software

Correspondence

alistair.duff1@nhs.net

Conflict of interest

None declared

Published online: 08 August 2018

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