Long‐term follow‐up of coeliac disease – what do coeliac patients want?

Abstract

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.