New data shows that patient visits and lung function tests for cystic fibrosis have not returned to 2019 levels despite new treatments and telehealth options.

RT’s Three Key Takeaways:

1. Care Utilization Gap: Cystic fibrosis care utilization for adults and children remained below 2019 levels through 2023 despite the stabilization of care patterns and the availability of new therapies.
2. Adult Care Trends: The percentage of adults meeting the criteria for a “comprehensive” care composite measure dropped from 44% in 2019 to 17% in 2023.
3. Telehealth Impact: Telehealth encounters did not fully offset the reduction in in-person care, and approximately 30% of the cystic fibrosis population had no reported telehealth visits between 2021 and 2023.

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 CFTR modulator therapies, according to new data published in the Journal of Cystic Fibrosis.

A descriptive analysis of 27,719 individuals in the US 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.

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 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.

This article was originally published by AMJ and was made available under the terms of the Creative Commons Attribution-Non Commercial 4.0 License.