Nutritional support programs may help CF patients keep the weight on
Study showcases role of clinicians in helping patients access resources
Grants that provide financial assistance for nutrition may help people with cystic fibrosis (CF) maintain a healthy body weight, according to a study whose findings emphasize clinicians’ role in making sure patients know about the resources available to them.
“The results of our study highlight the importance of active assessment of food insecurity and engagement with nutritional supplemental programs when available,” the researchers wrote in the study, “Fueling Health: Overcoming Food Barriers in Cystic Fibrosis Care,” which was published in Pediatric Pulmonology.
CF is a genetic disease marked by no or dysfunctional CFTR, a protein that helps control mucus production. In the disease, abnormally thick mucus builds up in organs such as the lungs, intestines, and pancreas.
Digestive issues are also common in CF and patients often have difficulty absorbing nutrients from the food they eat, making it harder to gain weight. Eating a high-calorie diet is generally recommended for people with CF to maintain their health, as they have high energy needs.
Accessing an appropriate diet can be difficult however, especially for patients who pay high costs for their medical care. Privately funded, disease-specific grants are available, however, to let people with CF access vitamins and oral supplements, along with federal- and state-funded programs such as the Supplemental Nutrition Assistance Program (SNAP) and the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC).
Accessing nutritional assistance
Scientists in the U.S. assessed how CF patients at their center in Iowa made use of these resources. The study included data on 219 people with CF, most being white. Slightly more than 50% had commercial insurance and 10% were enrolled in SNAP or WIC at any point during the study.
“Currently, Iowa is ranked in the bottom quartile of states for access to medical nutrition by the National Organization of Rare Disorders,” wrote the researchers, who found that the number of patients using food assistance grants has increased markedly in recent years, from 17% in 2017 to 44% in 2022. Enrollment in privately funded, disease-specific grants increased similarly.
The increased usage of the grants was mirrored by a decrease in the number of patients not talking about the grants with their clinicians. In 2017, 85% of patients didn’t discuss nutritional grants with their clinicians. By 2023, preliminary data shows about half hadn’t talked about grants.
“Ideally, every [person with] CF is presented opportunities to discuss food security with their CF care team, either in written or verbal form. However, as noted in our study, a considerable number of [people with] CF continue to not receive this information,” the researchers wrote. “The exact driver for this discrepancy remains unclear, whether social stigmatization of assistance halts patients from discussing programs or if the implicit bias of care teams misses identification of potentially eligible patients.” There may be a misconception that the presumably higher income of people on commercial insurance may mean that they can’t benefit from nutritional access programs, or that patients on state insurance may be recipients of assistance from other state or federal programs, the researchers said.
“Enhanced conversations and education with patients, as well as thorough and standardized care team documentation, can assist in ensuring knowledge of which resources and grants are being utilized,” the investigators wrote.
Using food assistance grants more also was accompanied by a decrease in the number of patients classified as underweight, particularly among those using assistance. This finding was likely also influenced by the fact that CFTR modulator therapy — a type of treatment that can address the underlying molecular defect in CF caused by certain mutations, and that promotes weight gain — became available around the same time. However, a decrease in the percentage of underweight patients was seen even among patients who never took modulators, implying that increased access to nutritional assistance grants may also have played a role.
“Previous studies have suggested that food insecurity is impacting [people with] CF at unprecedented rates and with many financial obligations for care, money for food and nutrition may be limited. Our study results suggest that additional nutritional support may help reduce the percentage of [people with] CF experiencing a BMI under goal by assisting with these increased costs,” the scientists wrote. BMI, which stands for body mass index, is a measure that takes weight and height into account.
The findings show that “continued advocacy for the importance of these external funding programs is critical,” the researchers wrote. “Future studies should further evaluate clinical outcomes as well as [people with CF’s] perception of these resources.”
About the Author
