A survey on patient educational needs in irritable bowel syndrome and attitudes toward participation in clinical research

Background: The educational needs of patients with irritable bowel syndrome (IBS) are poorly understood and rarely studied. Aim: To determine the educational needs of IBS patients, regarding content, presentation format, and expectations from healthcare providers. Methods: Fifteen functional GI clinic patients were asked open-ended questions to generate items for a questionnaire addressing the study aim. A total of 104 IBS patients received this questionnaire by mail (42 had declined to participate in a prior IBS study). To assess the frequency of endorsements and importance (on a scale of 1-3) of the items, an index was calculated (frequency of endorsements X mean rating per item, first priority scored 3, third priority scored 1). A higher index indicated greater endorsement based on frequency and rating of response. Results: A total of 29 (28%) subjects (22 willing, 7 unwilling to participate previously in questionnaire research) completed the questionnaire (mean age, 42.6 years; SD, 14.2 years; 19 female, 10 male). The overall low response rate is likely related to the population studied; 40.4% of our study subjects have declined participation in prior research. The response rate of those who have previously agreed to participate was 36%. The typical response profile included: interest in learning disease management (index = 1.4) and preference for information presented in person by an M.D. (2.4). Choice of presentation media included magazines (1.9), television (1.5), and Web sites (1.2). Doctors' qualities ranked high related to competency (0.8), allocation of sufficient time (0.7), and listening skills (0.4). Preferred incentives for research participation included a thank you note (0.4), summary of trial results (0.3), and monetary incentives (0.6). Conclusions: This qualitative study will provide pilot data for a national survey on the educational needs of IBS patients, for use in developing effective patient-centered, educational programs.