Interprofessional Development of Learning Resources for IBD Patient Portal

Background: This paper summarizes our experiences from a six-month pilot study of a web portal that provided secure communications, education, and support for self-management by Inflammatory Bowel Disease (IBD) patients. An analysis of “don't know” responses revealed room for improvement in site organization and content analysis. Objectives: To address a gap in knowledge, information, access, and peer support for IBD patients and to improve the quality of the website as a knowledge resource. Methods: As part of this pilot study of a web portal for IBD patients, patients’ learning outcomes were studied. The portal contents were analyzed for coverage and completeness. Content on the website was written by an interprofessional team of nurses, physicians, pharmacists, dietitians, IBD patients, and health informaticians. It included frequently asked questions, curricula, glossary, Cochrane plain language summaries, and discussion forums. Patients were recruited from the IBD Clinic in Nova Scotia. The study evaluated the impact of this intervention on quality of life using the the SF-36 and the Inflammatory Bowel Disease Questionnaire (IBDQ) pre and post. Patients' learning outcomes were evaluated using the Crohn’s and Colitis Knowledge Score (CCKNOW) test instrument pre and post. A survey of primary physicians was done. Portal content was analyzed by concepts using manual indexing and the MetaMap Transfer software for automatically mapping text to Unified Medical Language System. Results: 76 patients (26 male, 50 female) were enrolled from the IBD Clinic in Nova Scotia; 2 withdrew; 57 accessed the site; 49 completed the SF-36 and IBDQ; and 47 completed the CCKNOW pre and post. Patients logged into the portal 893 times. Usage ranged from 96% for FAQs to 28% for private messaging; and 64% reported improved IBD knowledge. The mean scores on the SF-36 were virtually unchanged and on the IBDQ were 151.62 pre and 156.04 post. The mean scores on the 24item CCKNOW were 12.61 (CI 11.32-13.90) pre and 13.17 (CI 11.8514.49) post with median of 13 at both times. The CCKNOW items were categorized as strong improvement (N=6), improvement/nochange (N=10), and worsened (N=8). Nevertheless, there was moderate improvement in CCKNOW scores approaching statistical significance (P<.07>. There were insufficent responses to the primary physicians' survey (N=5) to support a meaningful analysis. The completeness analysis determined that while all items were answerable through inference, there was a coverage mismatch. Text analysis revealed 3,142 unique concepts in 29,373 occurrences. Conclusions: Patients perceived the portal’s dual purpose as a communications and learning platform as its strength. Clinicians participating in this study value the importance of patient education and enablement. The pragmatic enrichment method showed promise for improving information retrieval.