Long-term follow-up of coeliac disease – what do coeliac patients want?
Article first published online: 27 FEB 2006
Alimentary Pharmacology & Therapeutics
Volume 23, Issue 6, pages 827–831, March 2006
How to Cite
BEBB, J. R., LAWSON, A., KNIGHT, T. and LONG, R. G. (2006), Long-term follow-up of coeliac disease – what do coeliac patients want?. Alimentary Pharmacology & Therapeutics, 23: 827–831. doi: 10.1111/j.1365-2036.2006.02824.x
- Issue published online: 27 FEB 2006
- Article first published online: 27 FEB 2006
- Publication data Submitted 10 August 2005 First decision 23 August 2005 Resubmitted 7 November 2005 Resubmitted 29 December 2005 Accepted 29 December 2005
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.
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.
A questionnaire was sent to 183 patients who had a duodenal biopsy between July 1994 and July 2004 which was consistent with coeliac disease.
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).
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.