RISK COMMUNICATION FOR PATIENTS WITH CHRONIC DISEASE UTILIZING INFLAMMATORY BOWEL DISEASE (IBD) AS A MODEL

Abstract

Inflammatory bowel disease (IBD) is a group of gastrointestinal disorders that result in significant morbidity and potential mortality among those afflicted. IBD typically requires lifelong care for adequate disease management, and evidence has shown that patients with IBD with poorly controlled disease are at the highest risk for serious and often irreversible negative outcomes including death. IBD pharmacotherapy carries risk of adverse effects, and fear and/or a lack of understanding of benefits and risks associated with treatment options contribute to non-adherence to medical therapy by IBD patients. In addition, although published literature provides some information regarding the risks associated with therapeutic options and from underlying disease, the evidence is often unclear and there is no consolidated source for providers to use when discussing risk from therapy or disease with patients. The overall aims of this body of work are to quantify the relative risks of serious infection associated with different IBD therapies, as well as to enumerate the risk of cancer inherent to IBD. These are two of the most clinically significant risks associated with IBD and its treatment. In addition, we determine the educational needs of these patients and their providers associated with these risks, in order to inform development of tools to enhance patients’ understanding of the risks associated with IBD and its treatment.