Abstract
Introduction
While lifelong and strict adherence to gluten-free diet (GFD) is essential for the successful treatment of celiac disease (CeD), only 30ā50% of patients are able to maintain a good adherence to GFD. We determined factors influencing the adherence to GFD at various ecological levels including intra-personal, inter-personal, organizational, community and system-based levels in adult patients with CeD.
Methods
A questionnaire to assess the adherence was developed and it was administered in the CeD clinic to patients with CeD on GFD for >1 year. Adherence to GFD was assessed in a subset of patients (nā=ā320) using Celiac Disease Adherence Test (CDAT).
Results
Overall, 978 patients [median age: 29 years; females: 592] with CeD on GFD were recruited. They reported many barriers to adherence to GFD including intra-personal barriers such as lack of knowledge about GFD (19%), inadequate financial resources (27.2%) and lack of self-motivation/confidence (55.3%); inter-personal barriers such as intake of gluten-containing food upon forceful insistence of friends/family (23.4%); organizational barriers such as high cost (70.8%) and non-availability of GF-food products (48.6%); community-based barriers like consumption of gluten-containing food at religious occasions/festivals (11.1%) and social occasions (27.2%); and system-based barriers such as non-referral to dietitian for counseling (21.9%). As per CDAT, 204 (63.7%), 73(22.8%) and 43(13.4%) patients had good, average, and poor adherence to GFD, respectively. On multivariable analysis, occasional consumption of gluten, non-availability of GF-food while dining out and coercing by family and friends for consumption of GC-food were found to have highest odds for poor adherence to GFD.
Conclusions
Non-referral to a dietitian for counseling, irregular follow-up visits, unavailability of flour mill, non-supportive family/friends, high cost and limited availability of GF-food are the most common barriers to adherence to GFD. There is a need to create infrastructure and develop strategies to overcome these diverse barriers at various levels of ecosystem and thereby facilitate better adherence to GFD.
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Data availability
The data generated and analyzed during this study can be found within the published article, or from the corresponding author on reasonable request.
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Acknowledgements
We acknowledge the contribution of each of the participants of the study. We would like to acknowledge Indian Council of Agricultural Research, Department of Biotechnology for providing grants for research on Celiac Disease. We do acknowledge the University Grants Commission for providing Fellowship to Wajiha Mehtab.
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WM: Review of literature, questionnaire development, data collection, data analysis, drafting of manuscript; AA: Review of literature, questionnaire development, data proofing, critical review of the paper; AC: Review of literature, questionnaire development, critical review of the paper; SA: Data analysis; AS: Data proofing, data analysis, critical review of the paper; AA: Data collection, data proofing; AB: Questionnaire development, data proofing, critical review of the paper; NS: Questionnaire development, critical review of the paper; VA: Critical review of the paper; AM: Questionnaire development, study supervision, critical review of the paper; GKM: Overall guarantor of the paper, designed the study concept, study supervision, data analysis, and finalization of the paper. All authors revised and approved the final version.
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Mehtab, W., Agarwal, A., Chauhan, A. et al. Barriers at various levels of human ecosystem for maintaining adherence to gluten free diet in adult patients with celiac disease. Eur J Clin Nutr 78, 320ā327 (2024). https://doi.org/10.1038/s41430-024-01399-8
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DOI: https://doi.org/10.1038/s41430-024-01399-8
