Impact of COVID-19 and CFTR Modulators on Cystic Fibrosis: A Real-World Analysis of Care Patterns

Document Type

Article

Publication Date

4-2026

Institution/Department

Pulmonary and Critical Care Medicine; Center for Interdisciplinary Population and Health Research

Journal Title

Pediatric pulmonology

MeSH Headings

Humans; Cystic Fibrosis (drug therapy, therapy); Child; COVID-19 (epidemiology); Adolescent; Male; Female; Adult; Young Adult; Middle Aged; Aged; Benzodioxoles (therapeutic use); United States (epidemiology); Cystic Fibrosis Transmembrane Conductance Regulator; Telemedicine; Drug Combinations; Aminophenols (therapeutic use); Quinolones (therapeutic use); Indoles (therapeutic use); Pyrazoles (therapeutic use); SARS-CoV-2; Registries; Cohort Studies; Oxadiazoles (therapeutic use); Aminopyridines (therapeutic use); Patient Acceptance of Health Care (statistics & numerical data)

Abstract

INTRODUCTION: Novel therapeutics and rapid expansion of telehealth have reshaped cystic fibrosis (CF) care; however, the impact on visit patterns and equitable access across the CF population remains unclear. We characterized changes in visit patterns from 2017 to 2022 and the association of sociodemographic and clinical factors with visit frequency in 2022. METHODS: This observational cohort study analyzed 2017-2022 US CF Foundation Patient Registry data for people aged 6-65 years. We described trends in care utilization and used adjusted longitudinal mixed-effects models to evaluate predictors of between-visit interval (BVI). RESULTS: The study included 28,340 people and 463,745 encounters. Average BVI increased 22.6% from 2019 to 2022, with larger increases among adults. The effect of COVID-related changes and highly effective modulator use on BVI (average increase in BVI of 13.5 and 9.3 days, respectively) were roughly additive for those with concomitant exposures. Starting elexacaftor/tezacaftor/ivacaftor (ETI) initially shortened BVI, followed by sustained increases. Non-White and Hispanic individuals had shorter BVI than their White, non-Hispanic counterparts. After adjustment, insurance changes and greater residential distance from CF centers were associated with longer BVI. CONCLUSION: Advances in CF therapeutics and COVID-19-related care adaptations have both markedly influenced visit frequency, indicating evolving care models responsive to the needs of people with CF. Persistent disparities by race, insurance status, and geographic location reveal ongoing challenges in achieving equitable access to routine CF care. Targeted strategies to address these inequities and enhance integrated care are essential to optimize outcomes for people with CF.

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