Exploring factors influencing quality of life variability among individuals with coeliac disease: an online survey

Martha M C Elwenspoek*, Jonathan P Banks, Prajakta Desale, Jessica C Watson, Penny F Whiting

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)peer-review

Abstract

Objective
Patients with coeliac disease (CD) need to follow a strict gluten-free diet to manage symptoms and prevent complications. Restrictions imposed by the diet can be challenging and affect quality of life (QoL). We explored sources of variation in QoL among CD patients.

Design
We conducted an online survey of coeliac patients in the UK, including a CD-specific QoL tool (CD-QOL 1.0), questions on diet adherence, and an optional comment box at the end. The survey was disseminated via social media and went live between January-March 2021. We performed multiple linear regression and free text analysis.

Results
We found a median CD-QOL score of 61 (IQR 44–76, range 4-100, n=215) suggesting good QoL (Good > 59); however, the individual QoL scores varied significantly. Regression analyses showed that people who found diet adherence difficult and people adhering very strictly had a lower QoL. Free-text comments suggested that people who adhered very strictly may do so because they have symptoms with minimal gluten exposure. People who found diet adherence difficult may be people who only recently started the diet and were still adjusting to its impact. Comments also highlighted that individuals with CD often perceive a lack of adequate follow-up care and support after diagnosis.

Conclusion
Better support and follow-up care is needed for people with CD to help them adjust to a gluten-free diet and minimise the impact on their QoL. Better education and increased awareness are needed among food businesses regarding cross-contamination to reduce anxiety and accidental gluten exposure.
Original languageEnglish
Article numbere001395
JournalBMJ Open Gastroenterology
Volume11
Issue number1
DOIs
Publication statusPublished - 2 Jun 2024

Bibliographical note

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© 2024 BMJ Publishing Group. All rights reserved.

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