Knowledge Translation Dataset: An e-Health Intervention for Pregnancy in Inflammatory Bowel Disease

Published: 01-01-2019| Version 1 | DOI: 10.17632/g223h3p8gy.1
Reed Sutton,
Kelsey Wierstra,
Vivian Huang


This article presents data collected from a cohort of patients with inflammatory bowel disease, who expressed interest in family planning and reproductive health in their clinical context. They were randomized (1:1, text-only vs. multimedia content) to access an online e-health portal containing educational information on the topic. The data collected at baseline includes demographics, DOB (converted to birth year to protect PII), highest level of education, employment, income, family history, languages, marital status, and extensive reproductive history including children, current pregnancy, pregnancy outcomes and health, future and current family plans. Inflammatory Bowel Disease history was also collected including family history of IBD, diagnosis, year diagnosed, previous and current medications, specialist access, discussion of reproductive topics in IBD, and sources of pregnancy in IBD information accessed. All of this data is included in Appendix A. Standardized, validated questionnaires on knowledge (‘CCPKnow’), reproductive concerns, beliefs about medications (‘BMQ’), and medication adherence (‘MARS-5’) were also collected at pre-intervention, post-intervention, and 6+ months later. They are detailed below and included in Appendix B. 1. Patient reproductive concerns: Six IBD-specific reproductive concern questions were asked (adapted from Marri et al (2007))3,4. Participants responded ‘yes’ or ‘no’ to each statement. 2. MARS-5: Self-reported adherence was assessed using a 5 statement questionnaire evaluating non-adherent medication taking behaviors5. Participants scored each statement on a 5-point Likert scale, ranging from 1 = always to 5 = never. 3. BMQ IBD S18: A version of the validated BMQ questionnaire specific to IBD was used to measure beliefs that influenced adherence to medications. Questions from the BMQ are classified as either “specific”(personal beliefs), further subdivided into necessity and concerns scales, or “general”, divided into harm and overuse scales6. Participants ranked statements from each scale on a Likert spectrum (1 = strongly disagree, 5 = strongly agree). This particular version of the BMQ included only the “specific” beliefs, with 8 necessity statements and 9 concerns statements. 4. CCPKnow: 17 item validated score used to measure IBD-specific reproductive knowledge7. Correct answers to the questions (5 options each question) are usually summed to form a total score, and typically categorized into levels consisting of poor (0 to 7), adequate (8 to 10), good (11 to 13) and very good (14 to 17). Feedback questions were asked regarding the intervention itself at post-intervention and 6 months later. The questions are included in Appendix C. Finally, analytics data on the usage and access time for specific pages and users was pulled from the portal, and is included in the raw datasets.