Patient awareness of extraintestinal manifestations of inflammatory bowel disease

Patient awareness of extraintestinal manifestations of inflammatory bowel diseases is important in improving patient understanding of their disease and health outcomes. We aim to characterize patient awareness of extraintestinal complications related to their disease.

A cross-sectional survey was administered from July 2011 to May 2012. All adult (>18 years) IBD patients attending gastroenterology clinics at a major tertiary teaching hospital (Mount Sinai Hospital, Toronto, ON, Canada) with a confirmed diagnosis of inflammatory bowel disease were invited to participate.

A total of 299 patients participated: 177 Crohn's disease, 104 ulcerative colitis, and 18 IBD-unclassified. The vast majority of respondents obtained their information from their gastroenterologist (92%) and from the internet (78%). Most patients felt their inflammatory bowel disease knowledge was "very good" (34%) or "enough to get by" (54%). Most patients were aware of risk of colon cancer (75%), arthritis (77%), dermatological manifestations (49%), ocular inflammation (47%), and osteoporosis (53%). However, few patients were aware of venous thromboembolism (18%), nephrolithiasis (12%), or primary sclerosing cholangitis (20%). The majority of respondents were unsure of the signs and symptoms of venous thromboembolism, that the risk was increased during flares and hospitalizations, and that they require prophylaxis during an inflammatory bowel disease-related hospitalization.

Although the majority of respondents demonstrated awareness of most extraintestinal manifestations, few realized that venous thromboembolism was a life-threatening systemic complication of inflammatory bowel disease. Greater knowledge of venous thromboembolism would enable patients to more promptly seek potentially life-saving intervention.