Risk factors for gaps in care during transfer from pediatric to adult cystic fibrosis programs in the United States
Abstract
RATIONALE: With improved survival into adulthood, the number of dedicated adult cystic fibrosis (CF) care programs has expanded in the United States over the past decade. Transfer from pediatric to adult CF programs represents a potential time for lapses in recommended health care. OBJECTIVES: To describe variability in transfer between pediatric and adult CF care programs and to identify factors associated with prolonged gaps in care. METHODS: Using the U.S. CF Foundation Patient Registry, we identified individuals with CF who transferred care from a pediatric to an adult CF care program during 2007 to 2013. A gap in care was defined as the time in days between the last recorded pediatric encounter and the first recorded adult encounter. A hierarchical multivariable regression model was applied to investigate the effect of program- and patient-level factors on gaps in care. RESULTS: There were 1,946 individuals at 155 pediatric CF programs who transferred to an adult CF program during the analytic period. The mean age at transfer was 21.1 years, with 68% transferring care between ages 18 and 21 years. The mean gap in care during transfer was 183 days (median, 106 d; range, 2-1,843 d); 47% had a less than 100-day gap, and 13% had a greater than or equal to 365-day gap (prolonged gap). Prolonged gaps in care were more likely to occur among those younger than age 18 years (odds ratio, 3.33; 95% confidence interval, 2.06-5.37) at the time of transfer and those who transferred to an adult program that was in a different city from their pediatric or affiliate program (odds ratio, 2.16; 95% confidence interval, 1.48-3.17). Having any health insurance coverage was associated with decreased likelihood of prolonged gaps (private insurance vs. no insurance [odds ratio, 0.15; 95% confidence interval, 0.09-0.23] or any government insurance versus no insurance [odds ratio, 0.11; 95% confidence interval, 0.07-0.18]). Lung function, nutritional status, and receipt of intravenous antibiotics in the final year of pediatric care were not associated with the length of gap in care during transfer. CONCLUSIONS: In the United States, the majority of individuals transferring from pediatric to adult CF care do so between ages 18 and 21 years. A minority had a gap greater than or equal to 365 days during transfer to adult care, suggesting that most did not have a disruption in recommended quarterly care visits during the transfer period. Risk factors for prolonged gaps in care include younger age at transfer, lack of health insurance, and relocation. Care coordination during transition in CF may minimize lapses in care by identifying and more closely addressing the needs of individuals at highest risk.
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It is likely that an intervention will work in slightly different ways for children and adolescents compared with adults with CF.
“It is therefore likely that an intervention will work in slightly different ways for children and adolescents (who may have high parent/ caregiver involvement), compared with adults with CF.”
From Psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis (2023) · cites this paper as Sawicki 2018
Adherence seems to be particularly challenging during adolescence and the transition to adult care.
“However, adherence seems to be particularly challenging during adolescence and the transition to adult care (Sawicki 2018).”
From Psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis (2023) · cites this paper as Sawicki 2018
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Self-citation
- Authors
- Sawicki, G. S., Ostrenga, J., Petren, K., Fink, A. K., D’Agostino, E., Strassle, C., Schechter, M. S., & Rosenfeld, M.
- Affiliations
- Boston Children's Hospital (US)
- Cystic Fibrosis Foundation (US)
- Emory University (US)
- Stanford University (US)
- Virginia Commonwealth University (US)
- Seattle Children's Hospital (US)
- Corresponding author
- Sawicki, Gregory S.
- ORCID
- Venue
- Annals of the American Thoracic Society
- Publisher
- Oxford University Press (OUP)
- Published
- 2018-02-01
- Volume
- 15
- Issue
- 2
- Pages
- 234-240
- ISSN
- 2325-6621 (ISSN-L)
- 2329-6933
- OpenAlex
- W2773518837
- Cited by
- 53
- References
- 22
- Citations by year
- 2026: 3 · 2025: 2 · 2024: 7 · 2023: 13 · 2022: 5 · 2021: 9 · 2020: 6 · 2019: 7 · 2018: 1
- FWCI
- 7.59
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Annals of the American Thoracic Society (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Cystic Fibrosis Foundation
- H2020 European Research Council
- Topics
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Cystic Fibrosis Research Advances
- Health Sciences › Medicine › Emergency Medicine › Hospital Admissions and Outcomes
- Keywords
- cystic fibrosis, transition from pediatric to adult care, care gaps, care transfer, health insurance coverage, health care access, CF Foundation Patient Registry, health care disparities, lung function, nutritional status, intravenous antibiotics, health care costs
- MeSH terms
- Transitional Care, Adolescent, Adult, Cystic Fibrosis, Female, Humans, Male, Risk Factors, Time Factors, United States, Program Evaluation, Medically Uninsured, Risk Adjustment, Transition to Adult Care
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