"I gained a superpower... is this how normal people feel?": A qualitative exploration of dietary perspectives and experiences amongst adults living with Cystic Fibrosis in the modulator era.

Abstract

Background: Cystic Fibrosis (CF) care has been transformed by modulator therapies, extending survival and reshaping health management. While CF-specific nutrition guidelines have evolved to emphasise not only energy intake but also diet quality, we still know little about the lived experiences and dietary perspectives of adults living with CF in this new treatment era.

Objectives: To explore the lived experiences and perspectives of Irish adults with CF regarding dietary behaviours and food choices in the modulator era.

Design: This qualitative study used reflexive thematic analysis and involved virtual semi-structured interviews and focus groups.

Participants: Twenty-nine adults with CF (male: 62%, mean age: 35 ± 10) were recruited via CF Ireland networks and specialist clinics. Eligible participants were adults (≥18 years) with a confirmed diagnosis of CF living in Ireland; those receiving enteral nutrition, following a prescribed diet for another condition, pregnant, or post-transplant were excluded. One participant was underweight, and 48% were overweight/obese.

Analysis: Transcripts were managed in NVivo®, and Braun and Clarke's reflexive thematic analysis framework was used.

Results: Twenty interviews and three focus groups (n = 9) were completed. Five interconnected themes were generated: Legacy effects of CF historic diet; Evolving relationship with food; Weight gain and altered body image; Reclaiming authority over their own health; Navigating dietary choices. Participants described persistent anxieties, shifting habits, and the influence of social, emotional, and practical factors on food practices. While modulators increased autonomy, participants expressed a need for more holistic nutrition guidance and highlighted concerns related to self-image.

Conclusion: This study provides an in-depth exploration of Irish adults with CF, showing how historic diets, modulators, and daily contexts shape food experiences. Findings highlight shifting relationships with food, body image, and autonomy in the modulator era, emphasising the need for holistic, patient-centred nutrition care that integrates medical guidance with lived experience.