Healthcare maintenance in inflammatory bowel disease patients: need for a top down approach

Background: Patients with inflammatory bowel disease (IBD) often depend on their gastroenterologist for IBD related healthcare maintenance. In our institution, we provide verbal advice to the patient and written guidance to the primary care physician on issues including vaccinations, bone health and cancer/dysplasia surveillance. Furthermore, we hold quarterly education days for newly diagnosed IBD patients and offer chronic disease self-management courses. Aims: To capture adherence to ECCO healthcare maintenance guidelines and to identify factors contributing to poor compliance. Methods: We administered an anonymous written survey to patients attending the IBD clinic and the infliximab infusion suite. The survey contained fourteen questions pertaining to the IBD diagnosis, medications, duration of disease, influenza and pneumonia vaccination status, smoking status, sun avoidance and sunscreen use and bone density scanning. Results: One hundred and twenty-seven patients completed our survey, 59 (46%) were male, ages ranged from 17 to 78. Sixty-five patients had Crohn's, 51 ulcerative colitis, 1 indeterminate colitis and 9 patients did not know their diagnosis. Duration of disease, gender or age were not significantly associated with knowledge of disease. Patients who did not know their disease were more likely not to know what medications they took (p=0.002) but it did not influence smoking status, vaccination uptake, use of sunscreen, regular attendance for laboratory investigations or measurement of bone density (p=ns). We found no significant difference in vaccination uptake and sunscreen use between patients taking biologic and immunosuppressant medications compared to patients treated with mesalamine products or on no therapy. Female patients were mostly up to date with cervical smear tests, likely a reflection of the Irish Cervical Screening programme. Seventeen percent of patients with Crohn's continue to smoke and half the smokers claim cessation was never recommended. Conclusions: Despite verbal and written advice to patients and primary care physician's vaccination uptake in patients on immunomodulatory and biologic therapy was poor. We provide structured education sessions but still 7% of patients had limited knowledge of their disease or of their medications. We propose that our patients attend an IBD nurse led annual review and education clinic to address ongoing healthcare issues to minimise adverse events associated with immunomodulatory and biologic therapy.