Abstract

BACKGROUND: Research in chronic illness shows that community resources can have a lasting influence on the course of the illness; however, little research has been done to evaluate the community agencies that specifically address the needs of inflammatory bowel disease (IBD) patients.OBJECTIVES: To survey awareness of community agency resources among patients who have surgery for IBD, and to analyze the association between using these resources and qualitative postsurgical outcomes.SUBJECTS AND METHODS: Ninety-two subjects who had surgery over a 12-month period completed, in full, the Inflammatory Bowel Disease Questionnaire (IBDQ), and a self-report instrument used to probe awareness and use of local community resources. Community resources were divided into two groups: those involving primarily social and educational participation (’social/ educational’) and those involving some individualized attention, usually from a professional or trained lay facilitator (’professional/individual’). The contribution of presurgical participation in each type of resource to postsurgical quality of life was tested using ANOVA, with IBDQ score as the dependent variable. The ANOVA was repeated with postsurgical disease activity as a covariable. IBDQ subscale scores were compared between groups that were found to differ in the ANOVA.RESULTS: Almost all subjects were aware of at least one available resource. Participation in resources before surgery was variable, but 50% of the sample participated in at least one social/educational resource, and 46.9% participated in at least one professional/individual support. 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.DISCUSSION: The association between presurgical participation in professional or individualized community resources and better subjective outcome of IBD surgery may be explained by a positive contribution of participation to coping with surgery for IBD. The data do not support the alternative explanation that subjects with less severe disease (and thus better outcome) have greater ability to participate, although further research is required.