Cystic fibrosis care utilization has not fully rebounded from the COVID-19 pandemic, remaining below 2019 levels through 2023.
A descriptive analysis of 27,719 individuals in the U.S. Cystic Fibrosis Foundation Patient Registry examined recommended care components from 2019 to 2023. The cohort included 14,011 adults and 13,708 children diagnosed before 2019.
Researchers assessed outpatient visits, pulmonary function tests, bacterial cultures, multidisciplinary assessments, and telehealth encounters. They used a composite measure of comprehensive care requiring at least four visits, four pulmonary function tests, four bacterial cultures, and one multidisciplinary assessment annually.
Adults experienced the largest declines. The proportion of adults with at least four outpatient visits fell from 55% in 2019 to 22% in 2023. Those with at least four bacterial cultures decreased from 45% to 17%. Comprehensive care met the criteria for only 17% of adults in 2023, down from 44% in 2019.
Children fared better, with 38% meeting the composite measure in 2023 compared to 45% in 2019, but utilization remained higher than adults across all indicators except telehealth.
Telehealth became a major component during the pandemic but failed to offset reduced in-person care. Approximately 30% of the cystic fibrosis population recorded no telehealth encounters from 2021 to 2023.
The findings suggest a new, lower-use baseline for cystic fibrosis care, raising questions about balancing individualized care models with surveillance for long-term complications.