CF patients, doctors comfortable with spacing out clinic visits

Adults with cystic fibrosis (CF) and their healthcare providers generally agree that those living with stable disease while on CFTR modulator therapy could wait longer between routine clinic visits, according to surveys.

Doctors of adult CF patients were more comfortable with lower lung function thresholds and fewer required visits per year than patients, while patients were more tolerant of prior flare-ups that required antibiotics, researchers found.

Pediatric providers, meanwhile, wanted to see more symptom control before easing up on follow-up.

The authors noted that the survey assessed what people considered important, not whether spacing out visits was actually safe. “Future research is needed to explore the practicality and safety of adjusting routine clinical follow-up across the CF community,” they wrote.

Survey details were published in Pediatric Pulmonology in the study “Meaningful Criteria to Persons Living With Cystic Fibrosis and Their Healthcare Providers in Helping Determine Adjustments to Routine Clinical Follow-Up.”

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Changing landscape for care

CF is a genetic disease characterized by the buildup of thick, sticky mucus in the lungs and other organs, leading to recurrent lung infections and a gradual decline in lung function. CFTR modulators, a newer class of medications, have changed the outlook for many people with CF. These therapies have been shown to improve lung function, reduce pulmonary exacerbations (sudden worsening of lung symptoms), and extend survival.

Because so many CF patients are now doing better on CFTR modulators, many have decided to cut back on clinic visits for CF-specific treatments. The research team, led by researchers at the University of Texas Southwestern, developed separate surveys for patients and healthcare providers to determine what factors determine the frequency of visits.

Some 152 adult CF patients and 177 healthcare providers completed the survey. Ninety-two of the providers practiced pediatrics, and 85 cared for adults. Among the patients, most (83%) reported using CFTR modulators, and all reported attending adult CF clinics.

Results showed that CF patients placed less importance on prior exacerbations than adult providers when deciding whether to extend the intervals between visits. Factors similar between patients and providers included lung function stability, breathing symptoms, other health conditions, CFTR modulator use, and adherence to treatment regimens.

Adult providers said they would be comfortable extending visits at a lower lung function cutoff, with a mean FEV1 (the amount of air forcefully exhaled in one second) of 54.4%, compared with 67.9% for CF patients and 77.96% for pediatric providers. Adult providers were also comfortable with fewer required visits per year, specifying a mean of 2.17 visits, compared with 2.79 for patients and 2.75 for pediatric providers.

There was no difference among groups in the number of exacerbations treated with oral antibiotics that they would tolerate before requesting closer follow-up. However, people with CF said they would be comfortable extending visits after more courses of intravenous (into-the-vein) antibiotics (mean of 1.29 in the preceding year) than adult providers (mean 0.78).

CF patients and adult providers largely agreed on the relevance of coughing symptoms. Pediatric providers, however, wanted to see “no” to “minimal” coughing before considering longer gaps between visits.

Providers cited several conditions as important reasons for closer follow-up. These included chronic hypercapnic respiratory failure, or an inability to expel carbon dioxide from the blood (91.5%), chronic hypoxic respiratory failure, or an inability to oxygenate the blood (90.4%), massive hemoptysis (severe coughing up of blood) in the past year (90.4%), and active treatment for a fungal lung condition called allergic bronchopulmonary aspergillosis (88.7%).

Others factors flagged by at least 70% of providers included a body mass index (body fat content) at or below 18.5 kg per square meter (88.1%), uncontrolled asthma (84.2%), a collapsed lung in the past year (81.9%), pregnancy (77.4%), a nontuberculous mycobacterium infection (76.3%), CF-related diabetes (73.4%), a history of organ or blood/marrow transplant (72.9%), and moderate to severe depression symptoms (70%).

Pediatric providers were more likely than their adult counterparts to view certain conditions as reasons to keep visits frequent. Those included an infection with the bacterium Burkholderia (66.3% vs 49.4%), CF-related diabetes (79.3% vs 67.1%), and nontuberculous mycobacterium infection (85.8% vs 65.8%). Adult providers, conversely, were more likely than pediatric providers to see pregnancy as a reason to keep closer follow-up (88.2% vs 67.4%).

“Both [CF patients] as well as CF providers express some level of comfort when considering alterations to visit frequency,” the team concluded. “Future directions are to use this summative data to develop a pragmatic approach to having a shared discussion regarding routine care follow-up.”