Long‐term follow‐up of coeliac disease – what do coeliac patients want?
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Summary: Background: Coeliac disease affects up to 1% of the population and the British Society of Gastroenterology recommends long‐term follow‐up of these patients, although the absolute risk of complications is small. Aim: To determine what proportion of patients with coeliac disease remain under specialist follow‐up and to examine patients’ perspectives on the long‐term management of coeliac disease. Methods: A questionnaire was sent to 183 patients who had a duodenal biopsy between July 1994 and July 2004 which was consistent with coeliac disease. Results: A total of 126 (69%) patients returned their questionnaire. Patients had on average been diagnosed with coeliac disease 5.4 years earlier. Eighty‐eight percentage were trying to follow a strict gluten‐free diet. Sixty‐two percentage of patients were under regular follow‐up although this varied between hospital clinic (doctor/dietitian, 92%) and General Practitioner (8%). Most patients found at least one aspect of the hospital out‐patient clinic very useful. The preferred method of coeliac disease follow‐up was to see a dietitian with a doctor being available (P < 0.05 vs. all other options). Conclusions: Respondents to this study showed great variation in follow‐up of their coeliac disease – 38% were under no active follow‐up. Patients would prefer to see a dietitian for long‐term follow‐up.
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The dietitian supports adherence to the gluten-free diet, adherence to healthier dietary habits, is safe and cost effective in follow-up care, and patients appreciate the contact with the dietitian.
“The dietitian supports the adherence to the GFD (116), adherence to healthier dietary habits (111), is safe and cost effective in the follow-up care (117), and patients appreciate the contact with the dietitian (118).”
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- Authors
- BEBB, J. R., LAWSON, A., KNIGHT, T., & LONG, R. G.
- Affiliations
- Nottingham City Hospital (GB)
- Corresponding author
- BEBB, J. R.
- ORCID
- LAWSON, A.
- Venue
- Alimentary Pharmacology & Therapeutics
- Publisher
- Wiley
- Published
- 2006-02-27
- Volume
- 23
- Issue
- 6
- Pages
- 827-831
- ISSN
- 0269-2813 (ISSN-L)
- 1365-2036
- OpenAlex
- W2143578376
- Cited by
- 70
- References
- 0
- Citations by year
- 2025: 1 · 2024: 3 · 2023: 5 · 2022: 3 · 2021: 8 · 2020: 4 · 2019: 6 · 2018: 2 · 2017: 4 · 2016: 4 · 2014: 3 · 2013: 8 · 2012: 3
- FWCI
- 3.06
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Alimentary Pharmacology & Therapeutics (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Goddard Space Flight Center
- Topics
- Health Sciences › Medicine › Gastroenterology › Celiac Disease Research and Management
- Health Sciences › Medicine › Surgery › Eosinophilic Esophagitis
- Health Sciences › Medicine › Gastroenterology › Gastrointestinal motility and disorders
- Keywords
- celiac disease, long-term follow-up, patient preferences, specialist follow-up, gluten-free diet, dietitian involvement, outpatient clinics, general practitioners, duodenal biopsy, patient perspectives
- MeSH terms
- Adolescent, Adult, Aged, Aged, 80 and over, Ambulatory Care, Attitude to Health, Celiac Disease, Female, Glutens, Health Personnel, Humans, Long-Term Care, Male, Middle Aged, Patient Satisfaction, Diet, Protein-Restricted
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