Assessment of inflammatory bowel disease educational videos for increasing patient engagement and family and friends’ levels of understanding

Objective: We developed five educational videos through a user-centered approach for patients with inflammatory bowel diseases (IBD) and their families and friends. Here, we assessed if IBD patient activation and family and friends’ abilities to understand IBD patients’ thoughts, feelings, and behaviors (i.e., perspective taking) changed after watching the videos. Methods: Through a pre-post survey, we assessed patient activation and perspective taking levels in people with a self-reported IBD diagnosis and their family and friends, respectively, before and after watching one of the videos. Results: Among 767 participants with IBD, patient activation scores increased significantly after watching each video. In regression analyses, patient activation levels were less likely to increase in biologic-naïve participants after viewing the coping video. Among 232 people who knew someone with IBD, perspective taking scores increased significantly in 8/9 domains, which was more likely to occur among women. Conclusions: Educational videos developed through a user-centered approach were associated with higher self-reported IBD patient activation scores and perspective taking levels among family and friends. Practice implications: These videos, which are now widely disseminated on social media, serve as a model for how to create educational materials for improving patient activation and empathy in the social media era

Health Confidence Is Associated With Disease Outcomes and Health Care Utilization in Inflammatory Bowel Disease: A Nationwide Cross-sectional Study

Background: We aimed to examine the associations between health confidence (one’s belief on the degree of control on their health and disease), inflammatory bowel disease (IBD) outcomes, and health care utilization among adults with IBD. Methods: In total, 17,205 surveys were analyzed from a cross-sectional sample of IBD patients at 23 gastroenterology (GI) practices participating in the Crohn’s and Colitis Foundations’ IBD Qorus Learning Health System. We used bivariate analyses and multivariable logistic regression to examine associations between health confidence and disease activity, opioid use, glucocorticoid use, well-being, and health care utilization. We used receiver operating curve analysis to determine a clinically relevant cutoff for health confidence (0-10 Likert scale). Results: Health confidence was highly correlated with patients’ well-being, symptomatic disease activity, opioid use, and glucocorticoid use (all P 4 times/month (adjusted odds ratio [aOR], 10.3; 95% CI, 6.1-17.3; P < .0001), 3-4 times more likely to have an IBD-related ED visit (aOR, 4.0; 95% CI, 2.9, 5.4. P < .0001), or hospitalization (aOR, 3.0, 95% CI, 2.1, 4.1, P < .0001) compared with patients with high health confidence (≥8). Conclusions: In a large, national sample of adults with IBD, there were strong associations between patients’ health confidence and multiple disease outcome measures. Health confidence scores <8 on a 0-10 Likert scale may be clinically useful to screen for patients who are at risk for ED visits and hospitalizations

Identifying and Predicting the Goals and Concerns Prioritized by Individuals with Inflammatory Bowel Disease

Background and Aims: In order to provide high-quality care, providers need to understand their patients’ goals and concerns. This study aims to identify and predict the goals and concerns prioritised by patients with inflammatory bowel disease [IBD] in the outpatient setting. Methods: Mixed-methods analysis was performed to identify the types, frequencies, and predictors of IBD patients’ goals and concerns using 4873 surveys collected over 2016–2019 at 25 gastroenterology clinics across the USA participating in the Crohn’s & Colitis Foundation’s IBD Qorus Learning Health System. Results: Patients with IBD most often prioritised goals and concerns related to symptoms/disease activity [50%] and clinical course/management [20%], whereas psychosocial/quality of life [12%] and medication [6%] concerns were less frequent. Females (odds ratio [OR] 22.1, 95% confidence interval [CI] 5.3–91.5) and patients in clinical remission [OR 2.2, 95% CI 1.2–4.1] were more likely to prioritise family planning. Patients >60 years old [OR 3.1, 95% CI 1.5–6.5] and patients with active disease [OR 3.2, 95% CI 1.4–7.6] were more often concerned about travelling. Smokers were more often concerned about nutrition [OR 4.2, 95% CI 1.9–9.2]. Surgery was more often a concern of patients with perianal Crohn’s disease [OR 2.1, 95% CI 1.2–3.5], active disease [OR 1.9, 95% CI 1.1–3.4], and those with recent hospitalisations [OR 2.5, 95% CI 1.2–5.4]. Conclusions: IBD patients prioritised the remission of physical symptoms as treatment goals and they were less frequently concerned about medications and their side effects. Patients’ demographics, IBD characteristics, and health care utilisation patterns can predict specific types of concerns/goals

The Reliability of Patient Self-reported Utilization in an Inflammatory Bowel Diseases Learning Health System

Background: Inflammatory bowel disease (IBD) care is beset with substantial practice variation. Learning health systems (LHSs) aim to learn from this variation and improve quality of care by sharing feedback and improvement strategies within the LHS. Obtaining accurate information on outcomes and quality of care is a priority for LHS, which often includes patients' self-reported data. While prior work has shown that patients can accurately report their diagnosis and surgical history, little is known about their ability to self-report recent healthcare utilization, medication use, and vaccination status. Methods: We compared patient self-reported data within the IBD Qorus LHS regarding recent IBD-related emergency department (ED) visits, hospitalizations, computerized tomography (CT) scans, corticosteroid use, opioid use, influenza vaccinations, and pneumococcal vaccinations with electronic health record (EHR) data. Results: We compared 328 patient self-reports to data extracted from the EHR. Sensitivity was moderate-to-high for ED visits, hospitalizations, and CT scans (76%, 87%, and 87%, respectively), sensitivity was lower for medication use with 71% sensitivity for corticosteroid use and only 50% sensitivity for self-reported use of opioids. Vaccinations were reported with high sensitivity, but overall agreement was low as many patients reported vaccinations that were not registered in the EHR. Conclusions: Self-reported IBD-related ED visits, hosp