Abstract

Abstract Background Nutritional therapy, including exclusive enteral nutrition (EEN), partial enteral nutrition (PEN), the Crohn’s Disease Exclusion Diet (CDED), and the Specific Carbohydrate Diet (SCD), can be used as adjunct or primary treatment for inflammatory bowel diseases (IBD). Patient and parent attitudes and experiences regarding nutritional therapy affect the decision to use them as treatment, and ultimately, their success. Aims We aimed to summarize existing literature exploring patient and parent attitudes and experiences regarding using nutritional therapy for IBD. Methods We completed a systematic review of the literature to find all publications related to pediatric and adult patient, and pediatric parent attitudes, beliefs, and experiences with implementation of four nutritional therapies for IBD: EEN, PEN, CDED and SCD. In collaboration with a research librarian, we prospectively developed a review protocol in PROSPERO; a search strategy was developed in Embase and translated for MEDLINE, CINAHL, PsycINFO, Cochrane Library, and Web of Science. Authors (AS and HM) reviewed reported titles and abstracts for inclusion for full text review. AS and HM extracted data from full texts meeting inclusion criteria. Results were qualitatively coded in an iterative process to reveal the following themes: attitudes and beliefs, experiences, barriers, and facilitators. Results Our search revealed 2,127 abstracts of which 276 full texts met inclusion criteria. Of these, 28 were included for data extraction and 21 for final analysis (Figure 1); 16 were non-randomized studies and 5 were randomized control trials. Regarding attitudes and beliefs, patients using EEN and PEN in several studies reported being willing to utilize this therapy again in the future. Patients using the SCD felt that the diet was superior to medications and feared long-term medication side effects. Patients using EEN, PEN, and SCD commonly experienced improved quality of life (QOL) scores. Frequently, QOL scores in those on EEN or PEN were the same as or better than those on biologic medications. Another common experience reported both by patients on EEN and SCD was occasional “cheating” on the diet or eating “illegal foods.” The most common barrier to implementation of EEN and PEN was palatability. For the SCD, time to prepare foods was a barrier. Few reports of facilitators to implementation exist. No studies of the CDED met inclusion criteria. Studies are summarized in Table 1. Conclusions Nutritional therapy is an essential component of IBD management, yet studies focusing on the patient and parent experience with these diets are limited. Future studies with the primary aim of exploring patient and parent perceptions of and experiences with nutritional therapy may guide appropriate therapy recommendations and allow the medical team to provide adequate support to ensure their success.

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