CYSTIC fibrosis care utilization remained below 2019 levels in adults and children through 2023.
Cystic Fibrosis Care Use Remains Lower
Cystic fibrosis care utilization has not fully rebounded after the COVID-19 pandemic, despite stabilization in care patterns from 2021–2023 and the widespread availability of highly effective cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapy.
A descriptive analysis of 27,719 individuals in the U.S. Cystic Fibrosis Foundation Patient Registry examined recommended components of cystic fibrosis care from 2019–2023. The cohort included 14,011 adults and 13,708 children in 2019, all diagnosed with cystic fibrosis before January 1, 2019, and contributing registry data during the study period.
Researchers assessed outpatient visits, pulmonary function tests, bacterial cultures, multidisciplinary assessments, and telehealth encounters. They also used a composite measure of comprehensive cystic fibrosis care, defined as at least four visits, four pulmonary function tests, four bacterial cultures, and one multidisciplinary assessment per year.
Adults Saw Larger Declines
Across most indicators, care utilization was lowest in 2020, rose during 2021–2023, but did not return to 2019 levels. The decline was especially pronounced among adults. The proportion of adults with at least four outpatient visits fell from 55% in 2019 to 22% in 2023, while those with at least four bacterial cultures decreased from 45% to 17%.
Using the composite measure, 44% of adults met criteria for comprehensive cystic fibrosis care in 2019, compared with 17% in 2023. Among children, 45% met the composite measure in 2019, compared with 38% in 2023. Children had higher utilization than adults across all indicators except telehealth.
Telehealth Did Not Fill the Gap
Telehealth became a major component of cystic fibrosis care during the pandemic, but it did not fully offset reduced in-person care. Approximately 30% of the cystic fibrosis population had no telehealth encounters reported from 2021–2023.
The authors noted that evolving care use may reflect the post-ETI era, changing clinical stability, insurance status, individual preferences, cystic fibrosis complications, and lasting habituation to less frequent clinic visits after the pandemic. Current cystic fibrosis care recommendations allow individualized visit frequency for stable people aged 6 years and older, but recommendations for spirometry and respiratory culture collection remain unchanged.
These findings suggest that cystic fibrosis care utilization has entered a new, lower-use baseline, raising questions about how clinicians should balance individualized care models with continued surveillance for long-term complications.
Reference
Atteih SE et al. Cystic fibrosis care utilization from 2019-2023: a descriptive analysis of adult and pediatric CF care utilization in the post-ETI and post-pandemic Era. Journal of Cystic Fibrosis. 2026;doi:10.1016/j.jcf.2026.06.003.
Featured Image: DebraAnderson on Adobe Stock.
- Author:
