Health Maintenance Education for Caregivers of Pediatric Inflammatory Bowel Disease Patients: Impact on Knowledge and Adherence

Abstract

Pediatric Inflammatory Bowel Disease (IBD) has the potential to affect growth, pubertal and psychosocial development. Limited knowledge and adherence can be problematic for both children with IBD and their caregivers. Inflammatory bowel disease experts recommend annual physical exams, gastroenterologist appointments, vaccinations, eye screenings, and laboratory work. At the time of implementation, the project site did not have a standardized process for health maintenance education for IBD patients/caregivers. The primary purpose of this study was to examine the impact of a live online educational intervention on caregivers of pediatric IBD patients’ level of knowledge and health maintenance adherence. Secondary aims included: (1) to compare various demographic characteristic with IBD knowledge scores and (2) to evaluate the educational session. IBD knowledge was measured using the IBD-KNOW tool before the intervention and one-week and six-weeks after the intervention. Caregivers were asked about adherence to and plans for scheduling health maintenance appointments pre-intervention and six-weeks later, respectively. Evaluation of the education was measured one-week after the session. Caregivers (N = 24), most college-educated, participated in one 30-minute education session. Results indicated a significant 13.7% (p =.002) increase in mean knowledge scores from pre-intervention to the six-week follow up. All caregivers (n = 14) reported they planned to schedule the recommended appointments (i.e., eye exam, blook work, vaccinations, and provider appointments) during the upcoming year. However, during the prior year, five of 24 caregivers reported the child did not have an eye exam. Results revealed a significantly higher knowledge level at baseline for those with a family history of IBD (t = 2.25, p = .035). Findings indicated no significant difference between knowledge scores in caregivers of children with Crohn’s disease versus Ulcerative colitis. Caregivers (n = 21) were overwhelmingly satisfied with the education; found it helpful and understandable. Online education may help to improve IBD-related knowledge, health maintenance plans, and prevent disease related complications. Future research could provide education directly to IBD patients in their teen-years and examine the impact on knowledge and adherence.