Improving transition from pediatric to adult cystic fibrosis care: lessons from a national survey of current practices
Authors
McLaughlin, Suzanne ElizabethDiener-West, Marie
Indurkhya, Alka
Rubin, Haya
Heckmann, Rebekah
Boyle, Michael Patrick
Document Type
Journal ArticlePublication Date
2008-05-03Keywords
CommunicationContinuity of Patient Care
Cystic Fibrosis
Health Care Surveys
Humans
Patient Education as Topic
Physician-Patient Relations
Health Services Research
Pediatrics
Primary Care
Metadata
Show full item recordAbstract
OBJECTIVES: More than 500,000 adolescents with special health care needs age into adulthood each year in the United States, and there is growing recognition of the need for support of their transition to adult-oriented health care. Because of improved survival, cystic fibrosis has experienced this increasing transition need, and cystic fibrosis policy leaders responded by mandating the transition of adults with cystic fibrosis to adult-focused cystic fibrosis care programs by 2000. The primary objective of this study was to characterize in detail recent transition practices at US cystic fibrosis programs, to identify areas for improvement and to serve as a model for other diseases. A secondary objective of this study was to develop and validate a survey for formal assessment of transition practices. METHODS: A 105-question survey on key aspects of transition was administered to cystic fibrosis care team members from all 195 US Cystic Fibrosis Care programs. Rates of adherence to recommended components of transition care were measured. RESULTS: A total of 448 surveys were obtained from 170 (87%) of 195 cystic fibrosis programs. Although transfer of care occurs at a median age of 19 years, initial discussion of transition does not occur until a median age of 17 years, limiting time to foster self-care skills. Only half of programs consistently perform a transition readiness assessment, 28% of centers offer visits focused on transition, and CONCLUSIONS: There is significant variability in transition support provided to young adults with cystic fibrosis, but there are simple steps that may lead to more consistent delivery of transition services. Methods of assessment and lessons learned from transitioning young adults at US cystic fibrosis programs may serve to improve transition for individuals with other childhood diseases.Source
Pediatrics. 2008 May;121(5):e1160-6. Link to article on publisher's siteDOI
10.1542/peds.2007-2217Permanent Link to this Item
http://hdl.handle.net/20.500.14038/37045PubMed ID
18450860Related Resources
Link to Article in PubMedae974a485f413a2113503eed53cd6c53
10.1542/peds.2007-2217