Comparing alternative follow-up strategies for patients with stable coeliac disease

Abstract

Background: Once clinically stable, patients with coeliac disease should have annual follow-up. Lack of capacity in gastroenterology outpatient clinics mean alternatives are required.

Objectives: We studied the effectiveness of follow-up deferred to general practitioners (GP-FU) and compared this with a neighbouring Trust where follow-up was through a dedicated nurse-led telephone clinic (T-FU).

Design: All patients with coeliac disease were posted a questionnaire examining patient satisfaction, adherence with gluten-free diet and calcium intake.

Results: 517 of 825 patients (62.7%) completed a postal questionnaire (median age 61, 72% female). 28% of GP-FU and 84% of T-FU patients received an annual review. Of those seen, 33% (GP-FU) and 53% (T-FU) were weighed (χ² 65.8, p<0.001), 44% and 63% had symptom review (χ² 81.1, p<0.001) and 33% and 51% had dietary adherence checked (χ² 60.6, p<0.001). Almost all patients considered their adherence with gluten-free diet (GFD) good or excellent, although the majority of patients failed to achieve the recommended daily intake of calcium. GP-FU patients were more likely to receive calcium±vitamin D supplements (77% vs 42%, χ² 88.2, p<0.001) and they were also more likely to receive appropriate vaccinations (67% vs 38%, χ² 17.6, p<0.001).

Conclusions: Discharge of patients with coeliac disease to primary-care in many cases results in their complete loss to follow-up. When patients were reviewed, either by GP-FU and T-FU, many aspects of their care are not addressed. Whether this will result in late complications remains to be seen.

Keywords: coeliac disease; follow up clinics; gluten free; standard of care.