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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2012

Open Access 01-12-2012 | Research

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

Authors: Jennifer B McCormick, Rachel R Hammer, Ruth M Farrell, Gail Geller, Katherine M James, Edward V Loftus Jr, Mary Beth Mercer, Jon C Tilburt, Richard R Sharp

Published in: Health and Quality of Life Outcomes | Issue 1/2012

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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.
Literature
1.
National Institute of Diabetes and Digestive and Kidney Diseases: Crohn's Disease. Edited by: Clearinghouse NDDI. Bethesda: National Institutes of Health; 2006:6.
2.
National Institute of Diabetes and Digestive and Kidney Diseases: Ulcerative Colitis. Edited by: Clearinghouse NDDI. Bethesda: National Institutes of Health; 2006.
3.
National Institute of Diabetes and Digestive and Kidney Diseases: Irritable Bowel Syndrome. Edited by: Clearinghouse NDDI. Bethesda: National Institutes of Health; 2007.
4.
Sandler RS, Everhart JE, Donowitz M, Adams E, Cronin K, Goodman C, Gemmen E, Shah S, Avdic A, Rubin R: The burden of selected digestive diseases in the United States. Gastroenterology 2002, 122(5):1500–1511. 10.1053/gast.2002.32978CrossRefPubMed
5.
Baumgart DC, Sandborn WJ: Inflammatory bowel disease: clinical aspects and established and evolving therapies. Lancet 2007, 369(9573):1641–1657. 10.1016/S0140-6736(07)60751-XCrossRefPubMed
6.
von Stein P, Lofberg R, Kuznetsov NV, Gielen AW, Persson JO, Sundberg R, Hellstrom K, Eriksson A, Befrits R, Ost A, et al.: Multigene analysis can discriminate between ulcerative colitis, Crohn's disease, and irritable bowel syndrome. Gastroenterology 2008, 134(7):1869–1881. 10.1053/j.gastro.2008.02.083CrossRefPubMed
7.
Jones MP, Wessinger S, Crowell MD: Coping strategies and interpersonal support in patients with irritable bowel syndrome and inflammatory bowel disease. Clin Gastroenterol Hepatol 2006, 4(4):474–481. 10.1016/j.cgh.2005.12.012CrossRefPubMed
8.
Pellissier S, Dantzer C, Canini F, Mathieu N, Bonaz B: Psychological adjustment and autonomic disturbances in inflammatory bowel diseases and irritable bowel syndrome. Psychoneuroendocrinology 2010, 35(5):653–662. 10.1016/j.psyneuen.2009.10.004CrossRefPubMed
9.
Montazeri A: Health-related quality of life in breast cancer patients: a bibliographic review of the literature from 1974 to 2007. J Exp Clin Cancer Res 2008, 27: 32. 10.1186/1756-9966-27-32PubMedCentralCrossRefPubMed
10.
Robinson FP: Measurement of quality of life in HIV disease. J Assoc Nurses AIDS Care 2004, 15(5 Suppl):14S-19S.CrossRefPubMed
11.
Kane SV, Loftus EV Jr, Dubinsky MC, Sederman R: Disease perceptions among people with Crohn's disease. Inflamm Bowel Dis 2008, 14(8):1097–1101. 10.1002/ibd.20418CrossRefPubMed
12.
Rubin DT, Siegel CA, Kane SV, Binion DG, Panaccione R, Dubinsky MC, Loftus EV, Hopper J: Impact of ulcerative colitis from patients' and physicians' perspectives: Results from the UC: NORMAL survey. Inflamm Bowel Dis 2009, 15(4):581–588. 10.1002/ibd.20793CrossRefPubMed
13.
Enck P, Kowalski A, Martens U, Klosterhalfen S: Internet-based assessment of bowel symptoms and quality of life. Eur J Gastroenterol Hepatol 2006, 18(12):1263–1269. 10.1097/01.meg.0000243879.25067.32CrossRefPubMed
14.
Eypasch E, Williams JI, Wood-Dauphinee S, Ure BM, Schmulling C, Neugebauer E, Troidl H: Gastrointestinal Quality of Life Index: development, validation and application of a new instrument. Br J Surg 1995, 82(2):216–222. 10.1002/bjs.1800820229CrossRefPubMed
15.
Peyrin-Biroulet L: What is the patient's perspective: How important are patient-reported outcomes, quality of life and disability? Dig Dis 2010, 28(3):463–471. 10.1159/000320403CrossRefPubMed
16.
Peyrin-Biroulet L, Cieza A, Sandborn WJ, Kostanjsek N, Kamm MA, Hibi T, Lemann M, Stucki G, Colombel JF: Disability in inflammatory bowel diseases: developing ICF Core Sets for patients with inflammatory bowel diseases based on the International Classification of Functioning, Disability, and Health. Inflamm Bowel Dis 2010, 16(1):15–22.CrossRefPubMed
17.
Bolge SC, Waters H, Piech CT: Self-reported frequency and severity of disease flares, disease perception, and flare treatments in patients with ulcerative colitis: results of a national internet-based survey. Clin Ther 2010, 32(2):238–245. 10.1016/j.clinthera.2010.02.010CrossRefPubMed
18.
Joyce JC, Waljee AK, Khan T, Wren PA, Dave M, Zimmermann EM, Wang S, Zhu J, Higgins PD: Identification of symptom domains in ulcerative colitis that occur frequently during flares and are responsive to changes in disease activity. Health Qual Life Outcomes 2008, 6: 69. 10.1186/1477-7525-6-69PubMedCentralCrossRefPubMed
19.
Crane C, Martin M: Social learning, affective state and passive coping in irritable bowel syndrome and inflammatory bowel disease. Gen Hosp Psychiatry 2004, 26(1):50–58. 10.1016/j.genhosppsych.2003.07.005CrossRefPubMed
20.
Irvine EJ: Review article: patients' fears and unmet needs in inflammatory bowel disease. Aliment Pharmacol Ther 2004, 20(Suppl 4):54–59.CrossRefPubMed
21.
Sewitch MJ, Abrahamowicz M, Bitton A, Daly D, Wild GE, Cohen A, Katz S, Szego PL, Dobkin PL: Psychological distress, social support, and disease activity in patients with inflammatory bowel disease. Am J Gastroenterol 2001, 96(5):1470–1479. 10.1111/j.1572-0241.2001.03800.xCrossRefPubMed
22.
Bertram S, Kurland M, Lydick E, Locke GR, Yawn BP: The patient's perspective of irritable bowel syndrome. J Fam Pract 2001, 50(6):521–525.PubMed
23.
Drossman DA, Chang L, Schneck S, Blackman C, Norton WF, Norton NJ: A focus group assessment of patient perspectives on irritable bowel syndrome and illness severity. Dig Dis Sci 2009, 54(7):1532–1541. 10.1007/s10620-009-0792-6CrossRefPubMed
24.
Fletcher PC, Jamieson AE, Schneider MA, Harry RJ: "I know this is bad for me, but...": a qualitative investigation of women with irritable bowel syndrome and inflammatory bowel disease: part II. Clin Nurse Spec 2008, 22(4):184–191. 10.1097/01.NUR.0000311707.32566.c8CrossRefPubMed
25.
Fletcher PC, Schneider MA: Is there any food I can eat? Living with inflammatory bowel disease and/or irritable bowel syndrome. Clin Nurse Spec 2006, 20(5):241–247. 10.1097/00002800-200609000-00011CrossRefPubMed
26.
Fletcher PC, Schneider MA, Van Ravenswaay V, Leon Z: I am doing the best that I can!: Living with inflammatory bowel disease and/or irritable bowel syndrome (part II). Clin Nurse Spec 2008, 22(6):278–285. 10.1097/01.NUR.0000325382.99717.acCrossRefPubMed
27.
Kennedy AP, Robinson AJ, Thompson DG, Wilkin D: Development of a guidebook to promote patient participation in the management of ulcerative colitis. Health & Social Care in the Community 1999, 7(3):177–186. 10.1046/j.1365-2524.1999.00174.xCrossRef
28.
Kennedy AP, Rogers AE: Improving patient involvement in chronic disease management: the views of patients, GPs and specialists on a guidebook for ulcerative colitis. Patient Edu Counseling 2002, 47(3):257–263. 10.1016/S0738-3991(01)00228-2CrossRef
29.
Morgan D: Focus Groups as Qualitative Researc. 2nd edition. Thousand Oaks, CA: Sage Publications; 1997.
30.
Mercer M, Brinich M, Geller G, K H, Highland J, James K, Marshall P, McCormick J, Tilburt J, Farrell R, et al.: How patients view probiotics: Findings from a multicenter study of patients with chronic digestive diseases. J Clin Gastroenterology 2012, 46(2):138–144. 10.1097/MCG.0b013e318225f545CrossRef
31.
Corbin J, Strauss A: Basics of Qualitative Researc. 3rd edition. Thousand Oaks, CA: Sage Publications Inc; 2008.
32.
NVivo Qualitatitve Data Analysis Software 8th edition. QSR International Pty Ltd; 2008.
33.
Metadata
Title
Experiences of patients with chronic gastrointestinal conditions: in their own words
Authors
Jennifer B McCormick
Rachel R Hammer
Ruth M Farrell
Gail Geller
Katherine M James
Edward V Loftus Jr
Mary Beth Mercer
Jon C Tilburt
Richard R Sharp
Publication date
01-12-2012
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2012
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-10-25

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