Perceived and Actual Quality of Life With Ulcerative Colitis: A Comparison of Medically and Surgically Treated Patients

OBJECTIVES:Patients with chronic ulcerative colitis (UC) often refuse colectomy, despite data indicating that it might improve quality of life. We hypothesized that perceived utility values are different for patients living with UC compared with UC patients after total proctocolectomy. Our aims were to compare the perceived utility assigned by UC patients with and without a colectomy to standardized chronic UC and post-colectomy scenarios, and to compare the utility of actual health states among groups.METHODS:We surveyed patients in a tertiary referral center from three groups, including non-UC, UC patients without colectomy, and UC patients who were post-colectomy. We measured the Time-Trade-Off (TTO) utilities of subjects for standardized scenarios, describing moderate UC and a post-colectomy state. Among all UC patients (with and without colectomy), we measured TTO utility for their own health state.RESULTS:Responses were obtained from 150 patients per group (n=450). The non-UC patients considered UC and colectomy scenarios equally (0.92), which was similar to UC patients without colectomy (0.90 and 0.91). Post-colectomy patients strongly preferred the colectomy scenario to the UC scenario (0.86 vs. 0.92, P<0.001). The median utility of UC patients without colectomy for their actual health state was higher than that of post-colectomy patients (0.96 and 0.92, P<0.05). Patients with more social support were more likely to have undergone colectomy compared with patients with little social support (odds ratio=1.20 per dependent/supporter).CONCLUSIONS:Patients living with UC prefer their actual health state to a perceived UC scenario or a post-colectomy scenario. Patients who have undergone colectomy equate the quality of life in their actual state with that in a post-colectomy scenario, and prefer each to a perceived chronic UC state. Given the variety of preferences and the importance of social support, opportunities to interact with UC patients who have previously undergone colectomy could help patients living with UC and their physicians to navigate these complex choices.

[1]  M. Rabau,et al.  The correlation between quality of life and functional outcome in ulcerative colitis patients after proctocolectomy ileal pouch anal anastomosis , 2003, Colorectal disease : the official journal of the Association of Coloproctology of Great Britain and Ireland.

[2]  G. Järnerot,et al.  The influence of demographic and disease-related factors on health-related quality of life in patients with ulcerative colitis , 2003, European journal of gastroenterology & hepatology.

[3]  James Waterman Glover.  United States Life Tables , 2013 .

[4]  G. Norman,et al.  Interpretation of Changes in Health-related Quality of Life: The Remarkable Universality of Half a Standard Deviation , 2003, Medical care.

[5]  Ken Kleinman,et al.  The prevalence and geographic distribution of Crohn's disease and ulcerative colitis in the United States. , 2007, Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association.

[6]  A. Lyons.  Ileostomy and colostomy support groups. , 2001, The Mount Sinai journal of medicine, New York.

[7]  R. Pounder,et al.  A simple clinical colitis activity index , 1998, Gut.

[8]  J. Macfie,et al.  Quality of life after restorative proctocolectomy with a pelvic ileal reservoir compares favorably with that of patients with medically treated colitis , 1993, Diseases of the colon and rectum.

[9]  R. Lamdan,et al.  Caregiver status: a potential risk factor for extreme self-neglect. , 2009, Psychosomatics.

[10]  Ichiro Kawachi,et al.  Social networks, social support, and survival after breast cancer diagnosis. , 2006, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[11]  Irwin G. Sarason,et al.  A Brief Measure of Social Support: Practical and Theoretical Implications , 1987 .

[12]  G. Lichtenstein,et al.  Quality of life after proctocolectomy with ileoanal anastomosis for patients with ulcerative colitis. , 2006, Journal of clinical gastroenterology.

[13]  N. Hyman,et al.  Continence Alterations After Ileal Pouch-Anal Anastomosis Do Not Diminish Quality of Life , 2003, Diseases of the colon and rectum.

[14]  R. Schulz,et al.  Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. , 1999, JAMA.

[15]  R. Beart,et al.  Ileal pouch-anal anastomosis. Reoperation for pouch-related complications. , 1990, Annals of surgery.

[16]  E. Eng,et al.  The save our sisters project. A social network strategy for reaching rural black women , 1993, Cancer.

[17]  A prospective evaluation of health-related quality of life after ileal pouch anal anastomosis for ulcerative colitis , 2001 .

[18]  N. Hyman,et al.  Is Ileal pouch-anal anastomosis really the procedure of choice for patients with ulcerative colitis? , 1998, Diseases of the colon and rectum.

[19]  A. Morris,et al.  Threefold increased risk of infertility: a meta-analysis of infertility after ileal pouch anal anastomosis in ulcerative colitis , 2006, Gut.

[20]  Z. Cohen,et al.  Quality of life of patients with ulcerative colitis preoperatively and postoperatively. , 1991, Gastroenterology.

[21]  A. Morris.  Patient-centered outcomes after therapy for colorectal cancer. , 2006, Surgical oncology clinics of North America.

[22]  C. Delaney,et al.  Functional Outcome and Quality of Life After Repeat Ileal Pouch-Anal Anastomosis for Complications of Ileoanal Surgery , 2004, Diseases of the colon and rectum.