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

Health and Quality of Life Outcomes

Volumn 10, Issue , 2012, Pages

  McCormick, Jennifer B ^a   Hammer, Rachel R ^b   Farrell, Ruth M ^c   Geller, Gail ^d   James, Katherine M ^a   Loftus Jr, Edward V ^a   Mercer, Mary B ^c   Tilburt, Jon C ^a   Sharp, Richard R ^c  

^a MAYO CLINIC   (United States)

^b MAYO CLINIC COLLEGE OF MEDICINE   (United States)

^c LERNER RESEARCH INSTITUTE   (United States)

^d JOHNS HOPKINS BLOOMBERG SCHOOL OF PUBLIC HEALTH   (United States)

Author keywords

Chronic gastrointestinal conditions; Inflammatory bowel disease; Irritable bowel syndrome; Patient adaptation; Symptom experience

Indexed keywords

ADULT; AGED; ARTICLE; AUDIO RECORDING; CLINICAL FEATURE; DATA ANALYSIS; FEMALE; GASTROINTESTINAL DISEASE; HUMAN; MAJOR CLINICAL STUDY; MALE; ATTITUDE TO HEALTH; CHRONIC DISEASE; ENTERITIS; INFORMATION PROCESSING; IRRITABLE COLON; LITERATURE; METAGENOMICS; MIDDLE AGED; PATHOPHYSIOLOGY; PATIENT; PATIENT ATTITUDE; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; QUESTIONNAIRE; SOCIAL CLASS; STATISTICS;

PROBIOTIC AGENT;

ADULT; AGED; AGED, 80 AND OVER; ANECDOTES AS TOPIC; CHRONIC DISEASE; FEMALE; FOCUS GROUPS; GASTROINTESTINAL DISEASES; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; INFLAMMATORY BOWEL DISEASES; IRRITABLE BOWEL SYNDROME; MALE; METAGENOMICS; MIDDLE AGED; PATIENT ACCEPTANCE OF HEALTH CARE; PATIENTS; PROBIOTICS; QUALITY OF LIFE; QUESTIONNAIRES; SOCIAL CLASS;

EID: 84857989179     PISSN: None     EISSN: 14777525     Source Type: Journal    
DOI: 10.1186/1477-7525-10-25     Document Type: Article

References (33)

1. National Institute of Diabetes and Digestive and Kidney Diseases Crohn's Disease. 2006, 6. Bethesda: National Institutes of Health, Clearinghouse NDDI, National Institute of Diabetes and Digestive and Kidney Diseases.
2. National Institute of Diabetes and Digestive and Kidney Diseases Ulcerative Colitis. 2006, Bethesda: National Institutes of Health, Clearinghouse NDDI, National Institute of Diabetes and Digestive and Kidney Diseases.
3. National Institute of Diabetes and Digestive and Kidney Diseases Irritable Bowel Syndrome. 2007, Bethesda: National Institutes of Health, Clearinghouse NDDI, National Institute of Diabetes and Digestive and Kidney Diseases.
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.2002.32978, 11984534.
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-X, 17499606.
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.2008.02.083, 18466904.
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.2005.12.012, 16616353.
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.2009.10.004, 19910123.
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. 10.1186/1756-9966-27-32, 2543010, 18759983.
10. Robinson FP. Measurement of quality of life in HIV disease. J Assoc Nurses AIDS Care 2004, 15(5 Suppl):14S-19S.
11. Kane SV, Loftus EV, Dubinsky MC, Sederman R. Disease perceptions among people with Crohn's disease. Inflamm Bowel Dis 2008, 14(8):1097-1101. 10.1002/ibd.20418, 18338774.
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.20793, 19067414.
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.0000243879.25067.32, 17099374.
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.1800820229, 7749697.
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. 10.1159/000320403, 20926873.
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.
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.2010.02.010, 20206781.
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. 10.1186/1477-7525-6-69, 2559827, 18803870.
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.2003.07.005, 14757303.
20. Irvine EJ. Review article: patients' fears and unmet needs in inflammatory bowel disease. Aliment Pharmacol Ther 2004, 20(Suppl 4):54-59.
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.x, 11374685.
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.
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/s10620-009-0792-6, 19337833.
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.c8, 18596487.
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. 10.1097/00002800-200609000-00011, 16980794.
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.ac, 18955845.
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.x, 22403827.
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.
29. Morgan D. Focus Groups as Qualitative Researc. 1997, Thousand Oaks, CA: Sage Publications, 2.
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.
31. Corbin J, Strauss A. Basics of Qualitative Researc. 2008, Thousand Oaks, CA: Sage Publications Inc, 3.
32. NVivo Qualitatitve Data Analysis Software. 2008, QSR International Pty Ltd, 8.
33. Remen RN. The power of words: how the labels we give patients can limit their lives. West J Med 2001, 175(5):353-354. 10.1136/ewjm.175.5.353, 1071625, 11694496.