Evaluation of quality of life in inflammatory bowel disease

Crohn's Disease and Ulcerative Colitis: From Epidemiology and Immunobiology to a Rational Diagnostic and Therapeutic Approach

Volumn , Issue , 2012, Pages 333-340

  Munkholm, Pia ^a   Pedersen, Natalia ^b  

^a UNIVERSITY OF COPENHAGEN   (Denmark)

^b GENTOFTE UNIVERSITY HOSPITAL   (Denmark)

Author keywords

Health related quality of life; Inflammatory bowel disease; Inflammatory bowel disease questionnaire; Psychological general well being index; Quality of life assessment; Rating Form of IBD Patient Concern; SF 12; Short form 36; Short Health Scale; Social functioning

Indexed keywords

EID: 84892475380     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.1007/978-1-4614-0998-4_25     Document Type: Chapter

References (59)

1. Baumgart DC, Carding SR. Inflammatory bowel disease: cause and immunobiology. Lancet. 2007; 369(9573): 1627-40.
2. Irvine EJ. Quality of life issues in patients with inflammatory bowel disease. Am J Gastroenterol. 1997; 92(12 suppl):18S-24.
3. Love JR, Irvine EJ, Fedorak RN. Quality of life in IBD. J Clin Gastroenterol. 1992;14(1):15-9.
4. Irvine EJ, Feagan B, Rochon J, Archambault A, Fedorak RN, Groll A, et al. Quality of life: a valid and reliable measure of therapeutic efficacy in the treatment of inflammatory bowel disease. Canadian Crohn’s Relapse Prevention Trial Study Group. Gastroenterology. 1994;106(2):287-96.
5. Canavan C, Abrams KR, Hawthorne B, Drossman D, Mayberry JF. Long-term prognosis in Crohn’s disease: factors that affect quality of life. Aliment Pharmacol Ther. 2006;23(3):377-85.
6. Hjortswang H, Jarnerot G, Curman B, Sandberg-Gertzén H, Tysk C, Blomberg B, et al. The influence of demographic and disease-related factors on health-related quality of life in patients with ulcerative colitis. Eur J Gastroenterol Hepatol. 2003;15(9):1011-20.
7. Hjortswang H, Almer S, Strom M. The network: a strategy to describe the relationship between quality of life and disease activity. The case of inflammatory bowel disease. Eur J Gastroenterol Hepatol. 1999;11(10):1099-104.
8. Casellas F, Arenas JI, Baudet JS, Fábregas S, García N, Gelabert J, et al. Impairment of health related quality of life in patients with inflammatory bowel disease: a Spanish multicenter study. Inflamm Bowel Dis. 2005;11 (5):488-96.
9. Rubin GP, Hungin AP, Chinn DJ, Dwarakanath D. Quality of life in patients with established inflammatory bowel disease: a UK general practice survey. Aliment Pharmacol Ther. 2004;19(5):529-35.
10. Casellas F, López-Vivancos J, Badia X, Vilaseca J, Malagelada JR. Influence of inflammatory bowel disease on different dimensions of quality of life. Eur J Gastroenterol Hepatol. 2001;13(5):567-72.
11. Lix LM, Graff LA, Walker JR, Clara I, Rawsthorne P, Rogala L, et al. Longitudinal study of quality of life and psychological functioning for active, fluctuating, and inactive disease patterns in inflammatory bowel disease. Inflamm Bowel Dis. 2008 Nov;14(11):1575-84.
12. van der Eijk I, Vlachonikolis IG, Munkholm P, Nijman J, Bernklev T, Politi P, et al. The role of quality of care in health-related quality of life in patients with IBD. Inflamm Bowel Dis. 2004;10(4):392-8.
13. Elkjaer M, Moser G, Reinisch W, Durovicova D, Lukas M, Vucelic B, et al. IBD patients need in health quality of care. ECCO consensus. J Crohns Colitis. 2008;2(2):181-8.
14. Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality of life. Ann Intern Med. 1993;118(8):622-9.
15. European Medicines Agency. Pre-authorisation evaluation of medicines for human use. European Medicines Agency, London. 2008. Doc. Ref. CPMP/EWP/2284/99 Rev. 1. http://www.ema.europa.eu. Accessed 4 Jul 2008.
16. Guidance for Industry Clinical Trial Endpoints for the Approval of Cancer Drugs and Biologics. 2007. http://www.fda.gov/cber/guidelines.htm. Accessed 23 Jan 2009.
17. Guyatt G, Mitchell A, Irvine EJ, Singer J, Williams N, Goodacre R, et al. A new measure of health status for clinical trials in inflammatory bowel disease. Gastroenterology. 1989;96(3):804-10.
18. Jowett SL, Scal CJ, Barton JR, Welfare MR. Short inflammatory bowel disease questionnaire is reliable and responsive to clinically important change in ulcerative colitis. Am J Gastroenterol. 2001;96(10):2921-8.
19. Elkjaer M, Shuhaibar M, Burisch J, Bailey Y, Scherfig H, Laugesen B, et al. E-health empowers patients with ulcerative colitis: a randomised controlled trial of the web-guided ‘Constant-care’ approach. Gut. 2010;59 (12): 1652-61.
20. Hjortswang H, Jârnerot G, Curman B, Sandberg-Gertzén H, Tysk C, Blomberg B, et al. The short health scale-a valid measure of subjective health in ulcerative colitis. Scand J Gastroenterol. 2006;41(10):1196-203.
21. Stjernman H, Grânno C, Jârnerot G, Ockander L, Tysk C, Blomberg B, et al. Short health scale: a valid, reliable, and responsive instrument for subjective health assessment in Crohn’s disease. Inflamm Bowel Dis. 2008;14(1):47-52.
22. Drossmann DA, Leserman J, Li Z, et al. The rating form of IBD patients concern: a new measure of health status. Psychosom Med. 1991;53(6):701-12.
23. Ware JE, Sherbourne CD. The MOS 36-item short-form Health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30(6):473-83.
24. Ware JE, Kosinski M, Keller SD. A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34(3):220-33.
25. Dupuy HJ. The psychological General Well-Being (PGWB) Index. In: Wenger NK, Mattson ME, Furberg CF, Elinson J, editors. Assessment of quality of life in clinical trials of cardiovascular therapies. New York: Le Jacq Publishing; 1984. p. 170-83.
26. Cohen RD. The quality of life in patients with Crohn’s disease. Aliment Pharmacol Ther. 2002;16(9):1603-9.
27. Thirlby RC, Land JC, Fenster LF, Lonborg R. Effect of surgery on health-related quality of life in patients with inflammatory bowel disease. Arch Surg. 1998;133(9):826-32.
28. Boonen A, Dagnelic PC, Feleus A, Hesselink MA, Muris JW, Stockbrügger RW, et al. The impact of inflammatory bowel disease on labor force participation: results of a population sampled case-control study. Inflamm Bowel Dis. 2002;8(6):382-9.
29. Trachter AB, Rogers AI, Leiblum SR. Inflammatory bowel disease in women: impact on relationship and sexual health. Inflamm Bowel Dis. 2002;8(6):413-21.
30. Sachar DB. Ten common errors in the management of inflammatory bowel disease. Inflamm Bowel Dis. 2003;9 (3):205-9.
31. Sachar DB. Indications for surgery in inflammatory bowel disease: a gastroenetrologists opinion. In: Kirsner JB, editor. inflammatory bowel disease. 5th ed. Philadelphia: WB Saunders; 2000. p. 611-5.
32. Sewitch MJ, Abrahamowicz M, Bitton A, et al. Psychological distress, social support, and disease activity in patients with inflammatory bowel disease. Am J Gastroenterol. 2001;96(5):1470-9.
33. Janke KH, Klump B, Gregor M, et al. Determinants of life satisfaction in inflammatory bowel disease. Inflamm Bowel Dis. 2005;11(3):272-86.
34. Pihl-Lesnovska K, Hjortswang H, Ek AC, et al. Patients’ perspective of factors influencing quality of life while living with Crohn’s disease. Gastroenterol Nurs. 2010;33(1):37-44.
35. Levenstein S, Li Z, Almer S, et al. Cross-cultural variation in disease-related concerns among patients with inflammatory bowel disease. Am J Gastroenterol. 2001;6(6):1822-30.
36. Straus WL, Eisen GM, Sandler RS, et al. Crohn’s disease: does race matter? The Mid-Atlantic Crohn’s Disease Study Group. Am J Gastroenterol. 2009;95(2):479-83.
37. Farrokhyar F, Marshall JK, Easterbrook B, et al. Functional gastrointestinal disorders and mood disorders in patients with inactive inflammatory bowel disease: prevalence and impact on health. Inflamm Bowel Dis. 2006;12(1):38-46.
38. Sullivan M, Karlsson J, Ware JE. The Swedish SF-36 Health Survey. III. Evaluation and criterion based validity: results from normative population. J Clin Epidemiol. 1998;51(11):1105-13.
39. Sainsbury A, Heatley RV. Review article: psychological factors in quality of life of patients with inflammatory bowel disease. Aliment Pharmacol Ther. 2005;21(5):499-508.
40. Cherepanov D, Palta M, Fryback D, et al. Gender differences in health-related quality of life are partly explained by sociodemographic and socioeconomic variation between adult men and women in the US: evidence from four US nationally representative data sets. Qual Life Res. 2010;19(8):1115-24.
41. Blondel-Kusharski F, Chircop C, Marquis P, Cortot A, Baron F, Gendre JP, et al. Groupe d’Etudes Thérapeutique des Affections Inflammatoires Digestives (GETAID). Health-related quality of life in Crohn’s disease: a prospective longitudinal study in 231 patients. Am J Gastroenterol. 2001;96(10):2915-20.
42. Casellas F, Lopez-Vivancos J, Casado A, et al. Factors affecting health related quality of life of patients with inflammatory bowel disease. Qual Life Res. 2002;11(8):775-81.
43. Verissimo R, Moto-Cardoso R, Taylor G. Relationship between alexithymia, emotional control, and quality of life in patients with inflammatory bowel disease. Psychother Psychosom. 1998;67(2):75-80.
44. PetrakF HJ, Clement N, et al. Impaired health-related quality of life in inflammatory bowel disease. Psychosocial impact and coping styles in national German sample. Scand J Gastroenterol. 2001;36(4):375-82.
45. Guthrie E, Jackson J, Schaffer J, et al. Psychological disorder and severity of inflamatory bowel disease predict health-related quality of life in ulcerative colitis and Crohn’s disease. Am J Gastroenterol. 2002;97(8):1994-9.
46. Mussell M, Bocker U, Nagel N, et al. Predictors of disease related concerns and other aspects of health-related quality of life in inflammatory bowel disease. Eur J Gastroenterol Hepatol. 2004;16(12):1273-80.
47. Moreno-Jimenez B, Lopez Blanco B, Rodriguez-Munoz A, et al. The influence of personality factors on helth- related quality of life with inflammatory bowel disease. J Psychosom Res. 2007;62(1):39-46.
48. Sprangers MAG, Schwartz CE. Integrating response sift into health-related quality of life research: a theoretical model. Soc Sci Med. 1999;48(11):1507-15.
49. Munkholm P, Langholz E, Davidsen M, Binder V. Disease activity courses in a regional cohort of Crohn’s disease patients. Scand J Gastroenterol. 1995;30(7):699-706.
50. Henriksen M, Jahnsen J, Lygren I, et al. Clinical course in Crohn’s disease: results of a five-year population-based follow-up study (the IBSEN study). Scand J Gastroenterol. 2007;42(5):602-10.
51. Solberg IC, Vatn MH, H0ie O, et al. Clinical course in Crohn’s disease: results of a Norwegian population-based ten-year follow-up study. Clin Gastroenterol Hepatol. 2007;5(12):1430-8.
52. Pizzi LT, Weston CM, Goldfarb NI, et al. Impact of chronic conditions on quality of life in patients with inflammatory bowel disease. Inflamm Bowel Dis. 2006;12(1):47-52.
53. Mussel M, Bocker U, Nagl N, et al. Predictors of disease-related concerns and other aspects of health-related quality of life in inflammatory bowel disease. Eur J Gastroenterol Hepatol. 2004;16(12):1273-80.
54. Borgaonkar MR, Townson G, Donnelly M, et al. Providing disease-related information worsens health-related quality of life in inflammatory bowel disease. Inflamm Bowel Dis. 2002;8(4):264-9.
55. Larsson K, Sundberg-Hjelm M, Karlbom U, et al. A group-based patient education programme for high-anxiety patients with Crohn’s disease or ulcerative colitis. Scand J Gastroenterol. 2003;38(7):763-9.
56. Russell MG, Nieman FH, Bergers JM, et al. Cigarette smoking and quality of life in patients with inflammatory bowel disease. South Limburg Study Group. Eur J Gastroenterol Hepatol. 1996;8(11):1075-81.
57. Rubin GP, Hugin APS, Chinn DJ, et al. Quality of Life in patients with established inflammatory bowel disease: a UK general practice survey. Aliment Pharmacol Ther. 2004;19(5):529-35.
58. Andersson P, Olaison G, Berndtsen P, et al. Health related quality of life in Crohn’s proctocolitis does not differ from a general population when in remission. Colorectal Dis. 2003;5(1):56-62.
59. Graff LA, Walker JR, Lix L, et al. The relationship of inflammatory bowel disease type and activity to psychological functioning and quality of life. Clin Gastroenterol Hepatol. 2006;4(12):1491-501.