Experiences of patients with chronic gastrointestinal conditions: in their own words

Health Qual Life Outcomes. 2012 Mar 8;10:25. doi: 10.1186/1477-7525-10-25.

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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Anecdotes as Topic
  • Chronic Disease
  • Female
  • Focus Groups
  • Gastrointestinal Diseases / physiopathology
  • Gastrointestinal Diseases / psychology
  • Gastrointestinal Diseases / therapy
  • Health Knowledge, Attitudes, Practice*
  • Humans
  • Inflammatory Bowel Diseases / physiopathology
  • Inflammatory Bowel Diseases / psychology*
  • Inflammatory Bowel Diseases / therapy
  • Irritable Bowel Syndrome / physiopathology
  • Irritable Bowel Syndrome / psychology*
  • Irritable Bowel Syndrome / therapy
  • Male
  • Metagenomics
  • Middle Aged
  • Patient Acceptance of Health Care / psychology
  • Patients / psychology*
  • Patients / statistics & numerical data
  • Probiotics / therapeutic use
  • Quality of Life*
  • Social Class
  • Surveys and Questionnaires