Personalized nutrition strategy is key in CF, patient interviews show
Nutritionists help patients meet goals, while high food costs can be barrier
People living with cystic fibrosis (CF) find it easier to maintain good nutrition when they have access to personalized care from dietitians and nutritionists, an interview-based study found.
But food costs, health problems, and lack of support from care teams can be barriers to achieving nutrition goals, the researchers said.
“Understanding these supports and challenges is essential for developing effective and personalized nutritional strategies” for CF patients, the researchers wrote. “Enhancing access to knowledgeable dietitians, simplifying nutritional recommendations, and addressing cost barriers can significantly improve nutritional outcomes.”
The study, “All my food is customized*”: Barriers & facilitators concerning nutrition for persons living with cystic fibrosis,” was published in the Journal of Cystic Fibrosis. It was funded by the CF Foundation (CFF).
CF is an inherited disorder in which thick, sticky mucus builds up in tissues. When this mucus accumulates in parts of the digestive system, it can impair a person’s ability to absorb enough nutrients and calories from food. That means malnutrition can be a concern for people with CF.
Nutrition in a changing landscape
Guidelines have historically recommended a high-fat diet to ensure sufficient calorie intake. In recent years, however, advances in treatment and care — particularly the emergence of CFTR modulator therapies — have improved the nutritional status of people with CF.
With this have come new considerations in the nutritional management of CF, as many people living with the rare disease are now classified as overweight or obese.
“The landscape of nutrition has changed drastically … and research is needed to understand how that has impacted dietary strategies and nutritional decisions,” the researchers wrote.
They set out to explore these concepts through the CFF-sponsored Exploring Attitudes Toward Nutrition (EATN) study, in which they conducted semi-structured interviews with 44 adults with CF. These interviews focused on participants’ perceptions about good nutrition and the factors that facilitate and impede it.
Most participants were on the triple combination CFTR modulator Trikafta (elexacaftor/tezacaftor/ivacaftor; 77%) and pancreatic enzyme replacement therapy (81%), which provides the body with digestive enzymes.
Most participants (45%) had a normal body weight, while 9% were underweight, 26% were overweight, and 21% were obese.
When asked to define what “good nutrition” meant to them, some participants said it was a means to achieve optimal health. Others looked at it as a way of categorizing foods as “good” or “bad,” the researchers found.
Participants generally felt nutrition was important for their health, and “some but not all felt they were meeting their optimal nutrition goals,” the scientists said.
Having the support of a registered dietitian or nutritionist was among factors many participants cited as helpful.
“I feel like my most valuable information has come directly from my nutritionist because she knows me,” one participant said. “She knows kind of my medical background to be able to give … specific advice for me.”
Other facilitators to optimal nutrition included help from a CF care team, physical activity, social support, and weight stabilization after starting on Trikafta. Participants said time-saving strategies like meal prepping and packing appropriate snacks also helped.
On the other hand, patients said a lack of convenience or time could be a barrier to nutritional health.
“I’m just exhausted at the end of my workday and it’s just easier to take pizza out of a package … even though I know that maybe that’s not the best thing for me,” one participant said.
Other reported barriers included gastrointestinal symptoms, sickness and hospitalization, perceptions of inadequate advice from dietitians or care team members, the cost of eating nutritious foods, and the impact of medications on eating.
In general, perceptions about nutrition among CF patients seem to have evolved, the scientists noted. Participants in previous studies reported thinking about nutrition in terms of getting enough calories, but people now view it more broadly, they found.
The researchers said that care team members need to develop new strategies to meet patients’ changing needs and “must be trained and empowered to establish trust with their patients” so that patients don’t seek information from unreliable sources.
Developing educational strategies to support patients in making food choices that are cost-effective and convenient is also key, they said.
The study’s findings “should serve as a foundation for future research, using the information gleaned about facilitators and barriers to optimal nutrition, for providers to synthesize what will be most useful for PWCF [people with CF] going forward,” the team wrote.
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