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.
Irritable bowel syndrome (IBS) is a gastrointestinal problem estimated to affect 9% to 22% of the US population.1-4 Recent studies suggest that although IBS symptoms are frequent in the community population,5 and those who do often discontinue care6 after receiving the diagnosis, despite continuing symptoms.7
As a diagnosis of exclusion with no defined physiologic basis, IBS is not well understood by physicians or patients and often not considered significant by the medical community.8-10 There are no specific treatments for IBS and no evidencebased treatment guidelines.11,12 This chronic condition has periodic exacerbation over many years that may adversely affect quality of life, especially in the areas of social and sexual functioning,13 events best studied from the patients’ perspective. However, few studies of IBS include this important perspective, and those that do usually only sample patients attending gastroenterology clinics, a very small minority of all IBS patients.
To better understand the patient’s view of the longitudinal nature of IBS, the factors that have an impact on symptom initiation and severity, and the needs of IBS suffers, we held community-based focus groups of people with diagnosed IBS. We attempted to determine the types of symptoms they experience, the chronicity and nature of episodic events, accommodations in lifestyles, successful treatments used, and IBS patients’ perceptions concerning their health and health care. This information should be useful to primary care physicians who provide the majority of care for people with IBS.
Methods
We performed a qualitative study using focus groups of volunteers previously diagnosed with IBS. Focus groups were held between September 15 and December 1, 1999. The subjects were identified by posted notices in primary care areas of a multispecialty private practice and through announcements in the local newspaper and at the local IBS support group. We used a structured interview guide reflecting the research questions to elicit responses from participants. During focus group discussions, the moderator used broad open-ended questions that began with low-intensity issues and moved toward higher-intensity issues. Specific probes were provided and modified after each session to incorporate findings from previous group discussions in an iterative process. The questions were initially tested using subjects from the local IBS support group to assure the questions’ comprehensibility and comprehensiveness.
The focus group discussion concentrated on 5 areas of interest: (1) description of IBS symptoms and episodes, (2) episode triggers and factors affecting the duration of episodes, (3) treatments used, (4) lifestyle changes due to IBS, and (5) experiences interfacing with the health care system. These areas of interest were selected on the basis of the existing literature14-16 and gaps in the literature identified from the researchers’ clinical experience and previous work on IBS.6,7,15*
Two trained research nurse co-facilitators led each focus group discussion. The master’s-prepared psychiatric nurse with extensive experience in group work led the group discussion, while a registered nurse experienced in focus groups served as an observer and recorder of content and nonverbal behavior. At the focus group meetings, the participants were welcomed and introduced using only first names. Time was spent informing participants of the group’s purpose and length, confidentiality issues and audiotaping, and that there were no right or wrong answers. It was stressed that the purpose of the sessions was to learn about participants’ experiences and opinions and not to attempt to reach a consensus about IBS. The 7 groups of 5 to 10 volunteers each met for 1 hour. After participants consented, the conversation was audiotaped and later transcribed verbatim. At the end of the session, the participants received a $25 honorarium for their time and travel.