Alexandra C. Hinton

and 3 more

Introduction: Novel therapeutics and the rapid expansion of telehealth have reshaped cystic fibrosis (CF) care. Their impact on visit patterns and equitable access across the CF population remains unclear. We characterized changes in visit patterns among people with CF from 2017–2022 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 longitudinal mixed-effects models to evaluate predictors of between-visit interval (BVI), adjusting for confounding identified by directed acyclic graphs separately for each predictor to ensure accurate, predictor-specific effect estimates. Results: The study included 28,340 people and 463,745 encounters. Average BVI increased 22.6% from 2019-2022, with larger increases among adults. During this span, BVI differences between F508del homozygotes and heterozygotes decreased significantly. Starting elexacaftor/tezacaftor/ivacaftor (ETI) initially shortened BVI, followed by sustained increases. Non-white and Hispanic individuals had shorter BVI than white, non-Hispanic counterparts. After adjusting for confounding and clinic-level variation, 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.