The patient's perspective of irritable bowel syndrome

OBJECTIVE: We wanted to understand how irritable bowel syndrome (IBS) affects patients' lives and their interactions with physicians and the health care system. STUDY DESIGN: A qualitative study was performed using focus groups of people with physician-diagnosed IBS. Immersion/crystallization was used to identify overriding themes. POPULATION: We included adult volunteers with a previous physician diagnosis of IBS. OUTCOMES MEASURED: The outcomes were patient-reported symptoms, episodes triggers, treatments, lifestyle changes, and interactions with their physicians that were related to IBS, and overriding themes identified from the focus groups. RESULTS: The subjects described IBS as a chronic episodic illness that affects their daily lives. Interaction with the medical community seldom clarified understanding of the condition or improved its management. Three overriding themes emerged from the groups: a sense of frustration, a sense of isolation, and a search for a niche in the health/sick role continuum. Frustration was evident in the perceived inability to control symptoms, prevent episodes, identify episode triggers, and obtain medical validation of the condition. The constant anticipation of the next IBS episode, the need for immediate access to toilet facilities, and the nature of the bowel symptoms often required withdrawal from social activities and resultant isolation. CONCLUSIONS: IBS is perceived as a chronic condition resulting in frustration and social isolation, and physicians are perceived to be providing inadequate medical information or support to patients with IBS.