Healthcare utilization for people living with Cystic Fibrosis Care (CF) in the United States has yet to return to pre-pandemic levels, even as care patterns have stabilized and highly effective therapies have become widely available, according to a new study published in the Journal of Cystic Fibrosis.
Researchers found that while healthcare visits and monitoring increased gradually after the sharp decline seen during the COVID-19 pandemic, overall care remained significantly lower than in 2019. The findings raise important questions about the future of Cystic Fibrosis care and whether current clinical practices provide sufficient long-term monitoring for patients.
Study Examines Post-Pandemic Care Trends
The descriptive analysis reviewed healthcare data from 27,719 individuals enrolled in the US Cystic Fibrosis Foundation Patient Registry between 2019 and 2023. The study included 14,011 adults and 13,708 children, all of whom had been diagnosed with cystic fibrosis before January 1, 2019.
Researchers evaluated several key aspects of recommended CF care, including outpatient clinic visits, pulmonary function tests, respiratory bacterial cultures, multidisciplinary assessments, and telehealth consultations.
To assess overall quality of care, investigators used a “comprehensive care” benchmark requiring patients to receive at least four outpatient visits, four pulmonary function tests, four bacterial cultures, and one multidisciplinary assessment each year.
Adult Patients Experienced the Largest Decline
The study found that healthcare utilization reached its lowest point in 2020 during the height of the COVID-19 pandemic. Although utilization improved steadily between 2021 and 2023, it remained below pre-pandemic levels across nearly every measure.
The decline was particularly pronounced among adults with cystic fibrosis.
The proportion of adult patients receiving at least four outpatient visits annually dropped dramatically from 55% in 2019 to 22% in 2023. Similarly, the percentage undergoing four or more recommended bacterial cultures declined from 45% to 17% over the same period.
Using the composite benchmark, only 17% of adults met the criteria for comprehensive CF care in 2023, compared with 44% in 2019.
Children fared comparatively better. While utilization also declined among pediatric patients, 38% of children continued to meet the comprehensive care benchmark in 2023, down from 45% before the pandemic. Across nearly all measures, children maintained higher levels of care utilization than adults.
Telehealth Could Not Fully Replace In-Person Care
The rapid adoption of telehealth during the pandemic played an important role in maintaining access to healthcare services. However, researchers concluded that virtual consultations were unable to fully compensate for the decline in face-to-face clinical care.
Approximately 30% of individuals with cystic fibrosis had no recorded telehealth visits between 2021 and 2023, suggesting that remote healthcare was not universally adopted or accessible.
Many aspects of cystic fibrosis management—including pulmonary function testing, respiratory culture collection, and comprehensive physical assessments—continue to require in-person clinical visits, limiting the extent to which telehealth can replace traditional care.
Balancing Individualized Care with Long-Term Monitoring
Researchers noted that several factors may explain the shift toward lower healthcare utilization. The widespread use of highly effective CFTR modulator therapies, particularly elexacaftor/tezacaftor/ivacaftor (ETI), has improved disease stability for many patients, potentially reducing the need for frequent clinic visits. Other contributing factors may include changes in insurance coverage, patient preferences, ongoing health complications, and lasting behavioral changes following the pandemic.
Current clinical guidelines allow physicians to individualize visit frequency for stable patients aged six years and older, while recommendations for routine lung function testing and respiratory cultures remain unchanged.
The findings suggest that cystic fibrosis care may have entered a new post-pandemic baseline characterized by lower healthcare utilization. Researchers say further studies will be needed to determine whether reduced monitoring affects long-term patient outcomes and to identify the most effective balance between personalized care and ongoing disease surveillance.
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