Exclusive enteral nutrition in the management of Crohn’s disease: a qualitative exploration of experiences, challenges and enablers in adult patients

• Published in: Journal of human nutrition and dietetics 2021-04, Vol.34 (2), p.440-449
• Main Authors: Mutsekwa, R. N., Edwards, J. T., Angus, R. L.
• Format: Article
• Language: English
• Subjects: adherence; challenges; Corticoids; Corticosteroids; Crohn's disease; Diet; Dietary restrictions; enablers; Enteral nutrition; exclusive enteral nutrition; Medical treatment; Monotony; Nutrition; patient experience; Patients; Pediatrics; Signs and symptoms; Social interactions
• ISSN: 0952-3871; 1365-277X
• DOI: 10.1111/jhn.12829

Background Exclusive enteral nutrition (EEN) is a first‐line treatment for Crohn’s disease in paediatrics with similar efficiency to corticosteroids. Benefits in adults have not been consistently observed with non‐adherence cited as a limiting factor. This study aimed to gain an in depth understanding of the adult patient experience with EEN, identifying challenges and enablers to inform clinicians in the development of strategies to help increase patient adherence. Methods This exploratory, qualitative study utilised individual semi‐structured interviews with 17 adult patients who had completed EEN. Participants were purposively recruited across a range of ages, social backgrounds and clinical experience. Interviews were audio recorded, transcribed and independently thematically analysed by two researchers to provide consensus in identifying key themes. Results Three major themes were identified. (i) Personal experience of EEN evolved over time, with the first few weeks the most challenging, becoming easier as symptoms improved, and participants became used to the EEN regimen. (ii) Participants developed coping strategies to manage challenges, including the impact on meal‐based social participation and dietary restriction and monotony. (iii) Enabling factors for adherence to EEN included patient self‐efficacy, health system support, supplement characteristics and access, and social support. Conclusions This study explored the evolving experiences of patients who completed a prescribed course of EEN. Patients described the challenges they faced, how they overcame them identifying enablers for adherence. This provides useful strategies for clinicians to integrate in their assessments and share with patients starting EEN. This study explored the evolving experiences of patients who completed a prescribed course of EEN. Patients described the challenges they faced, how they overcame them identifying enablers for adherence. This provides useful strategies for clinicians to integrate in their assessments and share with patients starting EEN.