Experiences of patients with chronic gastrointestinal conditions: in their own words
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RESEARCH
Open Access
Experiences of patients with chronic gastrointestinal conditions: in their own words Jennifer B McCormick1,5,8*, Rachel R Hammer2, Ruth M Farrell3,7, Gail Geller4, Katherine M James5, Edward V Loftus Jr6, Mary Beth Mercer7, Jon C Tilburt1,5 and Richard R Sharp7
Abstract Background: Irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) are chronic conditions affecting millions of individuals in the United States. The symptoms are well-documented and can be debilitating. How these chronic gastrointestinal (GI) conditions impact the daily lives of those afflicted is not well documented, especially from a patient’s perspective. Methods: Here we describe data from a series of 22 focus groups held at three different academic medical centers with individuals suffering from chronic GI conditions. All focus groups were audio recorded and transcribed. Two research team members independently analyzed transcripts from each focus group following an agreed upon coding scheme. Results: One-hundred-thirty-six individuals participated in our study, all with a chronic GI related condition. They candidly discussed three broad themes that characterize their daily lives: identification of disease and personal identity, medications and therapeutics, and daily adaptations. These all tie to our participants trying to deal with symptoms on a daily basis. We find that a recurrent topic underlying these themes is the dichotomy of experiencing uncertainty and striving for control. Conclusions: Study participants’ open dialogue and exchange of experiences living with a chronic GI condition provide insight into how these conditions shape day-to-day activities. Our findings provide fertile ground for discussions about how clinicians might best facilitate, acknowledge, and elicit patients’ stories in routine care to better address their experience of illness. Keywords: Chronic gastrointestinal conditions, Inflammatory Bowel Disease, Irritable Bowel Syndrome, Patient adaptation, Symptom experience
Background Irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis (UC), affect up to 16.3 million people in the United States [1-3]. As chronic conditions, IBS and IBD have far-reaching effects on a patient’s overall quality of life. Clinically these two conditions are different with respect to treatment; however, they share some symptoms. These conditions generally manifest as diarrhea, constipation, bloating, lethargy, bowel discomfort and pain, ulcers, intestinal bleeding, weight loss, skin lesions, and fever-the latter symptoms experienced by * Correspondence: [email protected] 1 Division of Internal Medicine, Mayo Clinic, Rochester, MN, USA Full list of author information is available at the end of the article
individuals with IBD [4]. The physical, emotional, and financial burdens of illness increase as these patients receive medical therapies and even surgeries, as is often the case for those with IBD, to ameliorate their condition. Although
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