"All my food is customized*": Barriers & facilitators concerning nutrition for persons living with cystic fibrosis.

BACKGROUND

Maintaining optimal nutrition is often an important concern for persons with cystic fibrosis (PWCF). With the introduction of effective modulators, the focus has now shifted from preventing malnourishment to instead stabilizing weight and preventing further weight gain. Research on how PWCF experience and manage their nutrition in this new era remains limited.

METHODS

The Exploring Attitudes Toward Nutrition (EATN) study employed a qualitative, multi-site approach to conduct semi-structured interviews with 44 adults living with CF. These interviews explored participants' definitions of "good" nutrition, the facilitators that help support their diet and lifestyle, and the barriers they face. Thematic analysis was used to identify key barriers and facilitators across personal, social, and healthcare-related domains.

RESULTS

Interviews revealed PWCF defined nutrition in a multitude of ways, from 'a means to achieve optimal health,' to categorizing foods as "good" or "bad." Key facilitators for maintaining good nutrition included support from registered dietitian/CF care teams, convenience, physical activity, social support, and observations of weight stabilization after elexacaftor/tezacaftor /ivacaftor (ETI). Conversely, barriers included lack of convenience or time, gastrointestinal symptoms, sick days/ hospitalization, negative dietitian/care team member experiences, finances, and the impact of medications or enzymes.

CONCLUSIONS

Understanding these supports and challenges is essential for developing effective and personalized nutritional strategies for PWCF. Enhancing access to knowledgeable dietitians, simplifying nutritional recommendations, and addressing cost barriers can significantly improve nutritional outcomes. Future research should focus on applicable solutions that utilize existing successful strategies while addressing common barriers many with CF face.