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Published on: August 29, 2025
Cystic fibrosis and transition to adult medical care
Lisa K Tuchman1, Lisa A Schwartz, Gregory S Sawicki
1Division of Adolescent and Young Adult Medicine, Center for Clinical and Community Research, Children's National Medical Center, George Washington University School of Medicine and Health Sciences, Washington, DC, USA. ltuchman@cnmc.org
Insights
Transitioning young adults with cystic fibrosis (CF) from pediatric to adult care is crucial. Defining and measuring successful outcomes for this transition remains a challenge for healthcare providers.
Area of Science:
- Pediatric Medicine
- Pulmonology
- Healthcare Management
Background:
- Increasing lifespan of cystic fibrosis (CF) patients necessitates specialized adult care.
- Over half of CF patients are adults, highlighting the need for effective transition strategies.
- The Cystic Fibrosis Foundation has initiated programs to support adult CF care.
Purpose of the Study:
- To review the challenges in healthcare transition for young adults with CF.
- To provide context for designing and evaluating successful transition processes.
- To discuss implications for all youth with special healthcare needs.
Main Methods:
- State-of-the-art literature review.
- Analysis of current transition practices and outcomes in CF care.
- Examination of developmental needs for self-management in young adults.
Main Results:
- The optimal facilitation and outcome measurement for CF healthcare transition are unclear.
- Many young adults with CF remain in pediatric care or transfer unprepared.
- Existing initiatives address provider training and program establishment but not outcome definition.
Conclusions:
- Effective healthcare transition for young adults with CF requires further research and clear outcome metrics.
- Developmental readiness and health system support are key to successful self-management transfer.
- Lessons learned from CF transition can inform care for other special healthcare needs populations.
Abstract:
Transition of young adults with cystic fibrosis (CF) from pediatric to adult medical care is an important priority, because many patients are living well into their fourth decade, and by 2010 more than half of all people living with CF will be older than 18 years. Transition to adulthood, a developmental process of skill-building in self-management supported by the health system, is important for the successful transfer to adult CF care. The US Cystic Fibrosis Foundation has been proactive in preparing for increasing numbers of young adults in need of specialized adult-oriented care by creating specialized clinical fellowships for physician providers and mandating establishment of adult CF programs. Despite these initiatives, how to best facilitate transition and to define and measure successful outcomes after transfer to adult care remains unclear. Many adults with CF continue to receive care in the pediatric setting, whereas others transfer before being developmentally prepared. In this state-of-the-art review we provide context for the scope of the challenges associated with designing and evaluating health care transition for adolescents and young adults with CF and implications for all youth with special health care needs.
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