A107 PATIENT PERSPECTIVES ON THE LONG-TERM MANAGEMENT OF CELIAC DISEASE

Abstract

Abstract Background Celiac disease (CD) is a common chronic gastrointestinal illness with a range of manifestations. The only available treatment is strict gluten avoidance, therefore patients are effectively self-managed. Despite the critical role patients play in their treatment, patient perspectives on long-term CD care have not been formally assessed and are therefore not represented in current clinical guidelines. Aims To determine the opinions of CD patients on the need for long-term CD follow-up, the utility of various aspects of CD follow-up, and the areas in which further information is desired. Methods The Manitoba Celiac Disease Cohort includes newly diagnosed adults with elevated TTG and/or EMA antibodies and Marsh III histology. At the 24-month follow-up visit, participants were asked to rate the utility of various aspects of CD care from 1–5 (low-high) and their desire for further information on CD-related issues from 1–6 (low-high). Results A total of 213 patients were recruited and 137 participants completed the online survey (median age 41 [interquartile range 29–57] years; 68% female). Adherence to a gluten free diet was variable, with 29% of patients having TTG antibodies above the upper limit of normal. Two-thirds of participants felt they should be seen regularly for their celiac disease, while 79.8% of those who wished to be followed felt they should be seen every 6–12 months. Blood tests were the most highly rated component of CD care (scored ≥4 by 78% of respondents). Celiac symptom review, information on research in celiac disease, and the opportunity to ask questions about vitamins and supplements were also positively regarded. Diet review was not generally considered helpful. 79% of patients desired further information on research in CD, while approximately 60% desired information on the long-term complications of CD and the risk of nutritional deficiencies. Conclusions The majority of CD patients find regular specialist follow-up helpful, particularly for biochemical assessment of disease activity and its complications. Further information on CD research and the long-term complications of CD should be addressed in follow-up visits. These aspects of follow-up care should be reflected in future guidelines. Funding Agencies None