Personalized Nutrition Programs May Help Improve Outcomes for CF Patients, Survey Suggests

New personalized strategies that can address the nutritional needs of cystic fibrosis patients may provide the best care and improve patient outcomes, a study suggests.

The study, “A survey identifying nutritional needs in a contemporary adult cystic fibrosis cohort,” was published in the journal BMC Nutrition.

CF is mainly known for its progressive respiratory symptoms. However, the underlying disease-causing CFTR gene mutations can also alter the function of the pancreas, causing gastrointestinal symptoms, CF-related diabetes, impaired absorption of nutrients, and other clinically important non-pulmonary manifestations.

Malnutrition in the CF population has been considered a critical problem requiring clinical intervention and care. More recently, excess weight among CF patients has also become a matter of concern, in particular in patients with less severe disease.

This change in the nutritional status of CF patients may be due to aggressive caloric supplementation, suboptimal food choices, lack of exercise, and medications. “This has added an additional layer of complexity to modern CF nutritional management,” the researchers wrote.

Therefore, a team at the University of Washington Medical Center conducted a survey to gain better insight into the most important nutritional concerns and desired health-improvement resources for CF adults.

Designed by three CF physicians and a CF specialized dietitian, the survey included 14 questions to help identify important nutritional concerns and most desired resources among the CF population.

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Sixty-six participants were recruited at a single CF center that serves adult patients in the Northwestern U.S. They had a mean age of 32.3 years, and 54 participants (81.8%) were classified as having severe CF-related genetic mutations (CFTR Class I-III). The most common disease-causing CFTR mutation was F508del.

In the study population, pancreatic insufficiency was more commonly reported in patients with a more severe condition. Approximately 98.1% of the patients with class I-III mutations were taking pancreatic enzyme replacement therapy, while such treatment was taken by 50% of patients with the not-so-severe mutations (CFTR Class IV-V).

Maintaining a healthy weight may be a challenge for CF patients due to their bodies’ impaired absorption of nutrients. Still, 38 out of the 66 patients in the study had a body mass index (BMI) meeting Cystic Fibrosis Foundation goals; nine patients were underweight, while 19 other patients were considered overweight or obese.

The participants’ most common nutrition concern was preventing weight loss, reported by 30.3% of the patients. Nutrition education was also a common concern for 22.7% of the patients.

However, the answers were significantly different between weight groups. Patients with higher BMIs were more concerned about preventing weight gain, while patients with lower BMIs were more focused on strategies to prevent weight loss.

In addition, researchers found that CF patients’ primary concerns were different between males and females. About 46.9% of the male participants mentioned preventing weight loss as their primary concern, while this opinion was only shared with 14.7% of the female patients. Preventing weight gain was a more common response among women, mentioned by 20.6% of women compared with 9.4% of men.

The preferred choice for health-improvement programs was online access to CF nutrition and fitness information (by 39.4% of the respondents), and the second choice was financial assistance for food and supplements (by 26.2% of the respondents). No significant differences were noted on the patients’ answers on this matter based on weight group, gender, or socioeconomic status.

Overall, the study revealed “a wide variety of nutritional needs in CF adults,” the researchers wrote, including “a high prevalence of overweight status, many patients desiring weight loss, and many seeking financial resources.”

“Our findings support the individualization of modern-day CF nutrition programs and development of online resources, in an effort to address the heterogeneous barriers that exist in the contemporary CF population and improve outcomes in patients with the disease,” the researchers concluded.