Routine cystic fibrosis care still below pre-pandemic levels in 2023
Adults saw biggest drops in visits, lung tests, bacterial cultures
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People with cystic fibrosis (CF) continued to receive less recommended routine CF care through 2023 than they did before the COVID-19 pandemic, with adults showing the largest declines, a U.S. study found.
Although care gradually rebounded after the pandemic, in-person clinic visits, lung function tests, and bacterial cultures remained below 2019 levels, and only 16% of adults and 37% of children met the study’s composite measure of comprehensive CF care in 2023.
Care changes may reflect several factors
According to the researchers, “care utilization rates may be influenced by widespread use of CFTR modulator therapy, as well as factors such as insurance status, health status, presence of CF complications, individual preference, and habituation to less frequent clinic visits during the pandemic.”
The study, “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,” was published in the Journal of Cystic Fibrosis.
CF is caused by genetic mutations that result in the loss or dysfunction of the CFTR protein. This leads to the accumulation of thick, sticky mucus in various organs, particularly in the lungs and digestive tract.
People with CF require frequent multidisciplinary evaluation to assess lung function, lung infections, and nutritional status. During the COVID-19 pandemic, in-person visits and clinical evaluations declined substantially. As restrictions lasted from March 2020 through June 2021, depending on the state, telehealth approaches were adopted to help monitor the disease. After the pandemic, CF centers generally resumed in-person assessment.
This study aimed to evaluate whether lower use of recommended CF care during the pandemic persisted through 2023. To do that, the research team assessed care utilization patterns for 27,719 people with CF — 14,011 adults and 13,708 children — participating in the CF Foundation’s Patient Registry.
Routine care use declined most among adults
Overall, 89% of children and 73% of adults were seen by CF care programs in all four follow-up years, from 2020 through 2023. The median age was 29 in adults and 9.3 in children. About two-thirds of adults and about half of children were on private medical insurance. Most adults (88%) had been prescribed Trikafta (elexacaftor/tezacaftor/ivacaftor) at least once from 2019 to 2023. Among children, 80.9% had been prescribed Trikafta by the end of 2023.
Among adults, the proportion of patients with at least four outpatient encounters declined from 90% in 2019 to 83% in 2023. A sharp decrease was seen in the proportion of patients who had at least four in-person clinic visits (55% to 22%), and at least four bacterial cultures (45% to 17%).
Lung function monitoring also declined, from 90% of adults undergoing at least two tests in 2019 to 73% in 2023. Multidisciplinary care — including visits with a social worker, a dietitian, and respiratory or physical therapists — and mental health screenings fell by 8% to 10% between 2019 and 2020, but remained stable in subsequent years.
Overall, children were more likely than adults to meet recommended levels of CF care. Outpatient encounters and multidisciplinary care remained consistently high throughout the study period.
However, some aspects of care declined over time, although to a lesser extent than in adults. The proportion of children with at least four clinic visits decreased from 73% in 2019 to 47% in 2023, while those with four or more bacterial cultures decreased from 68% to 43%. Lung function testing showed a similar pattern, as the percentage of children with four or more assessments dropped from 70% to 43% over the same period.
Few patients met comprehensive care measure
Using the study’s composite measure of comprehensive care — which included routine lung function tests, bacterial cultures, and multidisciplinary assessment — 43% of adults met the criteria in 2019, compared with 16% in 2023. Among children, 62% met the criteria in 2019 and 37% in 2023.
Only 2% of adults met the criteria in all years, and about half reached that level in some years. In children, 10% met the criteria in all years, and two-thirds met the criteria in some years. For most indicators, healthcare use was lowest in 2020, except for telehealth, and increased between 2021 and 2023, but did not reach pre-pandemic levels.
Adults who did not meet the composite measure in any year during the study period were more frequently men and full-time workers. They also had better lung function and a lower prevalence of CF-related diabetes (CFRD), pulmonary exacerbations treated with intravenous (into-the-vein) antibiotics, and infection prevalence than those who more consistently received recommended care.
Among children ages 6 and older, those who did not meet the composite measure in any year during the study period were older and less likely to be Hispanic, to have CFRD, or to have experienced pulmonary exacerbations treated with intravenous antibiotics. They also were prescribed Kalydeco (ivacaftor) more often but Trikafta less often, and had better lung function.
Overall, this study shows that “changes in CF care utilization have not returned to pre-pandemic levels by 2023 with a substantial decrease (25%) in the proportion of people meeting recommended outpatient encounters and routine testing between 2019 and 2023,” the researchers wrote.
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