There is a growing need to understand from the patient’s perspective the experience of irritable bowel syndrome (IBS) and the factors contributing to its severity; this has been endorsed by the Food and Drug Administration (FDA). Accordingly, we conducted focus groups to address this issue. A total of 32 patients with mostly moderate to severe IBS were recruited through advertising and were allocated into three focus groups based on predominant stool pattern. The focus groups were held using standard methodology to obtain a general assessment of the symptoms experienced with IBS, its impact, and of factors associated with self-perceived severity. Patients described IBS not only as symptoms (predominantly abdominal pain) but mainly as it affects daily function, thoughts, feelings and behaviors. Common responses included uncertainty and unpredictability with loss of freedom, spontaneity and social contacts, as well as feelings of fearfulness, shame, and embarrassment. This could lead to behavioral responses including avoidance of activities and many adaptations in routine in an effort for patients to gain control. A predominant theme was a sense of stigma experienced because of a lack of understanding by family, friends and physicians of the effects of IBS on the individual, or the legitimacy of the individual’s emotions and adaptation behaviors experienced. This was a barrier to normal functioning that could be ameliorated through identifying with others who could understand this situation. Severity was linked to health-related quality of life (HRQOL) and was influenced by the intensity of abdominal pain and other symptoms, interference with and restrictions relating to eating, work, and social activities, and of the unpredictability of the condition. This study confirms the heterogeneous and multi-component nature of IBS. These qualitative data can be used in developing health status and severity instruments for larger-scale studies.
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Garrett JW, Drossman DA. Health status in inflammatory bowel disease: biological and behavioral considerations. Gastroenterol. 1990;99:90–96.
Lembo A, Ameen V, Drossman DA. Irritable bowel syndrome: toward an understanding of severity. Clin Gastroenterol Hepatol. 2005;3:717–725. doi:10.1016/S1542-3565(05)00157-6.
Krueger RA. Quality of life and pharmacoeconomics in clinical trials. In: Spilker B, ed. Group dynamics and focus groups, vol. 2. Philadelphia: Lippincott-Raven Publishers; 1996:397–402.
Drossman DA, Li Z, Toner BB, et al. Functional bowel disorders: a multicenter comparison of health status, and development of illness severity index. Dig Dis Sci. 1995;40:986–995. doi:10.1007/BF02064187.
Francis CY, Morris J, Whorwell PJ. The irritable bowel severity scoring system: a simple method of monitoring irritable bowel syndrome and its progress. Aliment Pharmacol Ther. 1997;11:395–402. doi:10.1046/j.1365-2036.1997.142318000.x.
Spiegel BMR, Naliboff B, Mayer E, Bolus R, Chang L. Development and Initial Validation of a Concise Point-Of-Care Severity Index in IBS: The “B.E.S.T.” Questionnaire. 130 ed. 2006:A513.
Patrick DL, Drossman DA, Frederick IO, DiCesare J, Puder KL. Quality of life in persons with irritable bowel syndrome: development of a new measure. Dig Dis Sci. 1998;43:400–411. doi:10.1023/A:1018831127942.
Drossman DA, Leserman J, Li Z, Mitchell CM, Zagami EA, Patrick DL. The Rating Form of IBD Patient Concerns: a new measure of health status. Psychosom Med. 1991;53:238.
US Department of Health and Human Services, Food and Drug Administration, Center for Drug Evaluation and Research (CDER), Center for Biologics Evaluation and Research (CBER), Center for Devices and Radiological Health (CDRH). Guidance for industry patient-reported outcome measures: use in medical product development to support labeling claims. Health Qual Life Outcomes. 2006;4(79):1–32.
Patrick DL, Burke LB, Powers JH et al. Patient-reported outcomes to support medical product labeling claims. 2009.
Bertram S, Kurland M, Lydick E, Locke GRIII, Yawn BP. The patient’s perspective of irritable bowel syndrome. J Fam Pract. 2001;50:521–525.
Kennedy A, Robinson A, Rogers A. Incorporating patients’ views and experiences of life with IBS in the development of an evidence based self-help guidebook. Patient Educ Couns. 2003;50:303–310. doi:10.1016/S0738-3991(03)00054-5.
Drossman DA, Li Z, Toner BB, Diamant NE, Creed FH, Thompson D, Read NW, Babbs C, Barreiro M, Bank L, Whitehead WE, Schuster MM, Guthrie EA. A multi-national comparison of symptoms and health status of gastroenterology patients with functional bowel disorders. 106 ed. 1994:A489.
Drossman DA, Patrick DL, Whitehead WE, et al. Further validation of the IBS-QOL: a disease specific quality of life questionnaire. Am J Gastoenterology. 2000;95:999–1007. doi:10.1111/j.1572-0241.2000.01941.x.
Spiegel B, Strickland A, Naliboff BD, Mayer EA, Chang L. Predictors of patient-assessed illness severity in irritable bowel syndrome. Am J Gastroenterol.. 2008;103:2536–2543. doi:10.1111/j.1572-0241.2008.01997.x.
Drossman DA, Morris C, Schneck S, Hu Y, Norton NJ, Norton WF, Weinland S, Dalton C, Leserman J, Bangdiwala SI. International survey of patients with IBS: symptom features and their severity, health status, treatments, and risk taking to achieve clinical benefit. J Clin Gastroenterol. 2009; In press.
This work was supported by an educational grant from the Rome Foundation.
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Drossman, D.A., Chang, L., Schneck, S. et al. A Focus Group Assessment of Patient Perspectives on Irritable Bowel Syndrome and Illness Severity. Dig Dis Sci 54, 1532–1541 (2009). https://doi.org/10.1007/s10620-009-0792-6
- Focus groups
- Health-related quality of life (HRQOL)
- Irritable bowel syndrome (IBS)
- Patient perspectives