Introduction The long term follow up for patients with Coeliac disease is controversial. There are a number of models used in the UK which include follow up by primary care, conventional gastroenterology clinics, specialist Coeliac clinics & dietician- or nurse-led services. National guidelines do not directly address this issue. I developed a patient satisfaction questionnaire with the Leeds local group of Coeliac UK to survey opinion.
Methods A 30 point patient directed questionnaire was sent electronically to members of the Leeds Coeliac UK group. The questionnaire asked for basic demographics, details of diagnosis, compliance with the gluten free diet (GFD), opinions on the service provided & asked for a preference for the long term follow up.
Results 630 patients were sent an email copy of the questionnaire. I received 137 completed replies (22%). Mean age 61 years (range 8–91), 78% female, 96% British Caucasian.
18% had been diagnosed by their GP, 37% a non-specified consultant, 35% Gastroenterologist, 5% colorectal surgeon, 6% Paediatrics & 3% self diagnosed. Mean age at diagnosis was 48 (range 0.5 to 78) with a mean of 6 years from onset of symptoms to diagnosis.
77% claimed to be strict with the GFD, 21% described lapses with 2% variably compliant. 65% did not eat oats.
The majority (77%) wished to be monitored long term. Currently 45% saw their GP only, 29% attend general Gastroenterology clinics & 26% a Specialist Coeliac clinic. 82% described clinics as useful. In the future 28% preferred follow up to be provided by a GP with guidelines, 5% a general clinic, 60% a Coeliac clinic & 5% a dietician-led service. 2% wanted no follow up. 68% wished to be seen yearly, 10% 2 yearly.
Patients described their experience of in-patient care episodes as poor. 68% described staff knowledge of the GFD as average or poor, 87% had average or poor access to a GFD & 73% described poor access to dietetic services on the ward. 83% described cafe or canteen services for a GFD as poor.
59% had not received Pnemovax with 4% unsure.
Conclusion This is a large patient survey. The responders are clearly a self-selecting group. Even so a third prefer long term follow up with their GP, with the majority asking for specialist care. The poor number of Pneumovax recipients suggests guidelines are needed for primary care. This data may help guide the future development of services. Perhaps the time has come for a national survey. The experience of patients with Coeliac disease in hospital is a concern.
Disclosure of Interest None Declared
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