Long-term follow-up of coeliac disease--what do coeliac patients want?
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.


OBJECTIVE
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.
Bebb
J R
JR
Department of Gastroenterology, Nottingham City Hospital, Nottingham, UK. jamesbebb@doctors.org.uk
Lawson
A
A
Knight
T
T
Long
R G
RG
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000553:Ambulatory Care / Q000523:psychology; D001294:Attitude to Health; D002446:Celiac Disease / Q000178:diet therapy / Q000523:psychology / Q000628:therapy*; D018753:Diet, Protein-Restricted; D005260:Female; D005983:Glutens / Q000008:administration & dosage; D006282:Health Personnel; D006801:Humans; D008134:Long-Term Care / Q000379:methods; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction
D005983:Glutens