Transition to adult care in cystic fibrosis: The challenges and the structure

Jagdev Singh; Susan Towns; Geshani Jayasuriya; Sharon Hunt; Sharon Simonds; Christie Boyton; Anna Middleton; Andrea Kench; Chetan Pandit; Lucy R Keatley; Jimmy Chien; Jennifer Bishop; Yang Song; Paul Robinson; Hiran Selvadurai; Peter G Middleton; Dominic A Fitzgerald

doi:10.1016/j.prrv.2020.07.009

Transition to adult care in cystic fibrosis: The challenges and the structure

Paediatr Respir Rev. 2022 Mar:41:23-29. doi: 10.1016/j.prrv.2020.07.009. Epub 2020 Aug 2.

Authors

Jagdev Singh¹, Susan Towns², Geshani Jayasuriya³, Sharon Hunt⁴, Sharon Simonds⁴, Christie Boyton⁴, Anna Middleton⁴, Andrea Kench⁴, Chetan Pandit⁵, Lucy R Keatley⁶, Jimmy Chien⁷, Jennifer Bishop⁶, Yang Song⁷, Paul Robinson⁵, Hiran Selvadurai⁸, Peter G Middleton⁹, Dominic A Fitzgerald⁸

Affiliations

¹ Department of Respiratory Medicine, The Children's Hospital at Westmead, Sydney, NSW, Australia; Discipline of Child and Adolescent Health, Sydney Medical School, University of Sydney, Sydney, NSW, Australia. Electronic address: Jagdev.singh@health.nsw.gov.au.
² Department of Respiratory Medicine, The Children's Hospital at Westmead, Sydney, NSW, Australia; Discipline of Child and Adolescent Health, Sydney Medical School, University of Sydney, Sydney, NSW, Australia; Department of Adolescent Medicine, Sydney Children's Hospital Network, Australia.
³ Department of Respiratory Medicine, The Children's Hospital at Westmead, Sydney, NSW, Australia; Discipline of Child and Adolescent Health, Sydney Medical School, University of Sydney, Sydney, NSW, Australia; The Woolcock Institute of Medical Research, Sydney, NSW, Australia; Department of Adolescent Medicine, Sydney Children's Hospital Network, Australia.
⁴ Department of Respiratory Medicine, The Children's Hospital at Westmead, Sydney, NSW, Australia.
⁵ Department of Respiratory Medicine, The Children's Hospital at Westmead, Sydney, NSW, Australia; Discipline of Child and Adolescent Health, Sydney Medical School, University of Sydney, Sydney, NSW, Australia; The Woolcock Institute of Medical Research, Sydney, NSW, Australia.
⁶ Department of Respiratory and Sleep Medicine, Westmead Hospital, Westmead, Sydney, NSW, Australia.
⁷ Department of Respiratory and Sleep Medicine, Westmead Hospital, Westmead, Sydney, NSW, Australia; Westmead Clinical School, University of Sydney, NSW, Australia.
⁸ Department of Respiratory Medicine, The Children's Hospital at Westmead, Sydney, NSW, Australia; Discipline of Child and Adolescent Health, Sydney Medical School, University of Sydney, Sydney, NSW, Australia.
⁹ Department of Adolescent Medicine, Sydney Children's Hospital Network, Australia; Department of Respiratory and Sleep Medicine, Westmead Hospital, Westmead, Sydney, NSW, Australia.

PMID: 32917516
DOI: 10.1016/j.prrv.2020.07.009

Abstract

In developed countries, it is projected that there will be a 70% increase in the number of adults living with Cystic Fibrosis (CF) between 2010 and 2025. This shift in demographics highlights the importance of high-quality transition programmes with developmentally appropriate integrated health care services as the individual moves through adolescence to adulthood. Adolescents living with CF face additional and unique challenges that may have long-term impacts on their health, quality of life and life-expectancy. CF specific issues around socially challenging symptoms, body image, reproductive health and treatment burden differentiate people with CF from their peers and require clinicians to identify and address these issues during the transition process. This review provides an overview of the health, developmental and psychosocial challenges faced by individuals with CF, their guardians and health care teams considering the fundamental components and tools that are required to build a transition programme that can be tailored to suit individual CF clinics.

Keywords: Adolescents; Cystic Fibrosis; Psycho-social preparation; Transition.

Publication types

Review

MeSH terms

Adolescent
Adult
Cystic Fibrosis* / psychology
Cystic Fibrosis* / therapy
Humans
Quality of Life
Transition to Adult Care*