Of 219 patients who underwent surgery for Crohn’s disease or ulcerative colitis at Mount Sinai Hospital, Toronto, Ontario between September 5, 1996 and September, 29 1997, 145 could be contacted by telephone and were invited to participate in the study. Fifteen patients declined. One hundred and thirty questionnaires were distributed by mail for self-administration. Participants who did not return the questionnaire after one month received one telephone call. Ninety-eight questionnaires (68% of those contacted) were returned; six were partially complete. The instruments included a demographic questionnaire, a measure of health- related quality of life (Inflammatory Bowel Disease Questionnaire [IBDQ]), and an instrument probing awareness of and participation in local community resource activities related to IBD.
The IBDQ is a 32-item self-administered questionnaire used to measure the health-related quality of life of IBD patients that is sensitive to between-group differences. The IBDQ yields a total score, from 32 to 224, of IBD-related quality of life and subscales for quality of life related to bowel symptoms, systemic symptoms, emotional issues and social activity. Higher scores indicate better quality of life.
A self-report instrument was developed to probe awareness of local community resources. A list of the community services available to IBD patients was generated through conversation with IBD patients, gastroenterologists, nurses and staff at specific community agencies, and from the Blue Book, a comprehensive database of community services in Toronto (The Community Information Centre of Metropolitan Toronto, Toronto, Ontario). The agencies listed in the questionnaire were the Crohn’s and Colitis Foundation of Canada, the United Ostomy Association of Canada, the Victoria Order of Nurses, St Elizabeth Visiting Nursing Association and the IBD centre at Mount Sinai Hospital. An extensive list of services was created, and screened for applicability and comprehensiveness by experienced members of the staff of the IBD centre. For each service, subjects were asked whether they were aware of this service before surgery and how many times they had participated in it before surgery. Going without your pills? Buy cheap online
Symptom severity was estimated as the sum of three self- reported symptoms – abdominal pain, frequency of diarrhea and general well being – each reported on a four-point Likert scale, a method that has previously been found to correlate highly with the Crohn’s Disease Activity Index.
For analysis of the data, community resources were organized into two groups according to their format and the training of leaders. Resources that involve individual attention from trained persons (generally nurses but including physicians, other health professionals and trained lay visitors) were distinguished from resources involving primarily educational lectures, support meetings by untrained facilitators or social contact. The contribution of presurgical participation in each type of resource to postsurgical quality of life was tested using a one-way ANOVA, with IBDQ score as the dependent variable and membership in each resource group as two independent variables. The ANOVA was then repeated with postsurgical disease activity as a covariable. IBDQ subscale scores were compared between groups that were found to differ in the ANOVA. Values of P were calculated for two-tailed tests of significance using the Bonferroni correction for multiple comparisons.
Statistical analyses were performed with SPSS software (SPSS Inc, Chicago, Illinois).