Abstract

Inflammatory bowel disease (IBD) is a chronic illness with periods of varying disease activity called flares and remissions. Since IBD impacts quality of life, patients make IBD disease management decisions every day. Previous research indicates limited insight about factors that influence decisions regarding disease management and the types of decisions IBD patients make. The purpose of this integrative review is to identify types of treatment and non-treatment decisions and the factors that influence decision making regarding disease management among individuals with IBD. An integrative literature review was performed based on the Whittemore and Knafl framework. PubMed, Web of Science, and PsychINFO were searched for relevant articles, from 2010-2016, using the key terms: decision making, patient preferences, self-management, self-care, nutrition, diet, stress, symptom, Colitis, Crohns, and IBD. Twenty-eight articles met the inclusion criteria. From these, research showed two types of decisions: treatment decisions related to medication and surgery, and non-treatment decisions focused on diet modification. Five themes that influence decisions were identified: experiencing symptoms, provider recommendations, convenience attributes, psychosocial factors, and informational needs. Most of the studies found a positive relationship between an increased number of symptoms and a patient's willingness to engage in treatment decisions. Although support from providers is highly influential for treatment decisions, most studies reported that provider recommendations did not align with patient preferences. Future work is needed to understand factors that influence decisions among recently diagnosed patients, to focus on non-treatment-related decisions, and to clarify the role of psychosocial factors in promoting disease decision making among IBD patients. This integrative review identified that, for patients, experiencing symptoms is the most important factor that influences treatment and non-treatment decisions.

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