Background: The metabolic impact of poor diet quality in cystic fibrosis (CF), coupled with a rise in obesity and modulator-induced weight gain, is a growing concern. Our study aimed to understand knowledge and perspectives regarding dietary changes on modulators, and how measured nutrient intake changes with different dietary patterns in response to diet education. Methods: A cross-sectional survey was administered to 82 adult CF patients at the University of Alabama Birmingham. A subset of 10 participants received diet education and followed two diet patterns sequentially: a general healthful (GH) diet and a high fat (HF) diet. Three-day diet records were analyzed following each diet pattern. Results: A total of 82 adults responded to the survey and 42% of respondents reported making healthful dietary changes on modulators. Only 56% of respondents were able to correctly identify which foods contained fat. Diet record analyses showed a significant decrease in energy intake and fat intake on the GH diet compared to the HF diet. Baseline HEI scores improved significantly (p=0.0254) following education on a GH diet pattern, but were significantly lower following the HF diet (p=0.0179). Conclusions: While nearly half of survey respondents reported making healthy dietary changes on modulators, basic nutrition knowledge deficits persist. Measured diet quality was poor at baseline and significantly improved after receiving an educational session on GH eating. Findings highlight the need for targeted, basic education on GH eating patterns in the clinical practice and larger studies of nutrition interventions for improving diet quality in CF.

Background: One-third of people with cystic fibrosis (PwCF) are food insecure, with profound negative implications for their health. This qualitative study explored lived experiences with food insecurity among PwCF or their caregivers and summarized their perspectives on food insecurity screening in the CF programs where they receive care. Methods: Semi-structured qualitative interviews were conducted with two groups: (1) adults with CF and (2) parents or caregivers of children with CF. PwCF or their caregivers with previously documented food insecurity were referred for participation by pediatric and adult CF programs across the United States. Interviews were recorded and transcribed, and data were coded and analyzed by two independent coders using a content-analysis approach with a constant comparative method to generate themes. Results: A total of 26 participants from 22 CF programs were interviewed. The sample included 17 adults with CF and 9 parents of children with CF. Participants were predominantly White (88%) and female (92%). Five overarching themes emerged: (1) Food insecurity among CF patients and their families is onerous; (2) Financial constraints imposed by the CF disease contribute to food insecurity; (3) Federal and state programs provide limited food assistance, and other support is minimal; (4) Shame and stigma engulf conversations around food insecurity with CF care teams; (5) Food insecurity screening in clinical settings is critical. Conclusions: Food insecurity among PwCF is invisible, but its consequences are dire. Assistance is limited, screening is inconsistent, and stigma is widespread. There is an urgent need to normalize food insecurity screening, standardize the screening process, and expand food assistance programs for PwCF.