Of 92 subjects who completed both the resource questionnaire and the IBDQ, 43 (47%) were men and 49 (53%) were women. The mean age was 38.0 years (range 17 to 71 years). The mean age at onset of symptoms was 27.6 years (range six to 68 years). Forty-six (50%) had ulcerative colitis, while 43 (47%) had Crohn’s disease and three (3%) did not know their diagnosis. Thirty-one subjects (34%) had pelvic pouch surgery (ileal pouch-anal anastomosis), and 61 (66%) had a bowel resection or other type of surgery. Subjects were contacted several months after surgery (mean 9.0 months, range three to 15 months). Mean IBDQ score did not differ significantly between groups defined by sex (mean ± SD: males 159.90±40.87; females 164.29±32.35), diagnosis (ulcerative colitis 157.38±40.34; Crohn’s disease 166.53±32.70) or type of surgery (pelvic pouch 155.05±39.36; other surgery 165.89±34.63). Time since surgery was not correlated with IBDQ score or that of its subscales.
Awareness of community resources in general was high. Almost all of the 98 subjects who completed the survey of resource use were aware of at least one available resource (Table 1). Awareness of individual resources ranged from 20% to 75%. Participation in resources was also variable. Of the 92 subjects who completed the survey of resource use and the IBDQ, twenty-two (24%) participated in at least one social/educational resource but no professional/individual resources. Twenty subjects (22%) participated in a professional or individualized resource only. Twenty-six subjects (28%) did not participate in any of the resources surveyed, and twenty-four subjects (26%) participated in both professional/individual and social/educational resources.
TABLE 1 Percentage of 98 postsurgical inflammatory bowel disease patients who endorse awareness of and participation in specific community resources before surgery
Newsletters and/or books
Pelvic pouch support group
Heel n’ Wheel a Thon
Local community centres
Support group meetings
Ostomy quarterly magazine
Patient visiting service
Art or music therapy
Any professional/ individual
Child care services
For the 92 subjects who completed both the IBDQ and the survey of resources, ANOVA revealed a main effect of professional/individual resource use on postsurgical quality of life but no main effect of social/educational resources and no interaction (Table 2).
TABLE 2 ANOVA of the contribution of professional/individual resource use, social/educational resource use and a combination of the two to health-related quality of life (Inflammatory Bowel Disease Questionnaire)
Repeating the ANOVA with disease activity as a covariable results in a nonsignificant contribution of professional resource use (F=2.52, P=0.116). This is expected because the IBDQ is highly correlated with disease activity (correlation coefficient -0.50, P<0.001).
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TABLE 3 Relationship between preoperative use of professional/ individual resources and the Inflammatory Bowel Disease Questionnaire (IBDQ) subscales
Table 3 illustrates the relationship between preoperative use of professional/individual resources and the facets of postoperative quality of life measured by the IBDQ subscales: bowel, systemic, emotional and social problems. Patients who received professionally trained social support differed significantly in postoperative quality of life from those who received no resources in total IBDQ, systemic symptoms and emotional problems.