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BACKGROUND Patient-provider co-production of care is integral to managing inflammatory bowel diseases (IBD), chronic and incurable conditions that affect patients’ quality of life. Patients in the IBD Qorus Learning Health System self-report symptoms and treatment goals prior to clinic visits via electronic surveys, which helps their providers develop patient-centered treatment plans. This study examines factors that predict patients’ active participation in the program to inform future strategies to promote programmatic engagement and continuity of care. METHODS A retrospective cohort study was performed using electronic health records and survey results from a private community gastrointestinal practice engaged with Qorus between 2016 and 2021. Patients with IBD who consented to participate in Qorus were followed for two years after they submitted the first pre-clinic visit survey. The primary outcome was the ratio of eligible surveys (submitted within two weeks prior to clinic visits) to the number of clinic visits, with a ratio <0.5 representing inactive participation and ≥0.5 representing active participation. The first survey and its associated clinic visit were excluded from participation score calculation because it does not reflect patients’ longitudinal involvement. Multivariable logistics regression was performed with patient demographics, mental health status, prior healthcare utilization, and disease severity as covariates. RESULTS Among 244 patients who met the inclusion criteria, 122 were inactive participants and 122 were active participants. Inactive participants completed a median of 0 (IQR 0-1) surveys and 3 (IQR 1-5) clinic visits, while active participants completed a median of 2 (IQR 1-3) surveys and 2 (IQR 2-4) clinic visits (Table 1). Multivariable logistics regression shows that older age, history of anxiety or depression, and higher number of clinic visits were associated with inactive participation. Compared to the age group 18-24 years old, patients ≥35 were less likely to participate actively: 35-44 (OR 0.32 [95% CI 0.11-0.90]), 45-54 (OR 0.24 [95% CI 0.07-0.72]), ≥55 (OR 0.34 [95% CI 0.12-0.94]). Patients with a history of anxiety or depression showed less active participation than those without (OR 0.44 [95% CI 0.25-0.77]). Higher number of clinic visits was also associated with less active participation (OR 0.88 [95% CI 0.78-0.99]) (Table 2). CONCLUSION Age ≥35, history of anxiety or depression, and frequent clinic visits were associated with less active participation in an IBD Learning Health System. Lack of familiarity with digital health resources, concomitant mental health disorders, or participation fatigue may potentially explain these findings. Further research is needed to investigate the causes of inactive participation to design interventions that address these causes.

BACKGROUND Social factors such as race, education, and financial hardships have been shown to affect health outcomes of patients with inflammatory bowel disease (IBD). Although early identification of socially vulnerable patients is critical for targeted interventions, it is still limited by screening tools that are incomprehensive and time-consuming. We investigate the utility of the social vulnerability index (SVI), a census tract-specific measure estimated by the Centers for Disease Control and Prevention, for predicting patients' healthcare utilization, based on 15 different social determinant variables including employment, housing, and transportation. METHODS We reviewed the electronic health records and surveys of patients with IBD at a private community practice enrolled in IBD Qorus Learning Health System, a national quality improvement consortium, from 2016-2021. Each patient's home address was mapped to an SVI value, ranging from 0 to 1 and increasing as the patient's vulnerability increased. An SVI was considered low if it was less than the median SVI and high if it was greater than or equal to the median SVI. Cox proportional hazards regression was performed to determine the relationship between SVI and healthcare utilization (IBD-related ED visit/hospitalization, urgent message*, and CT scan use), controlling for potential confounders such as IBD subtype, baseline clinical disease activity, physician global assessment, steroid use, and six-months-prior IBD-related ED visit/hospitalization and CT scan use. The “survival time” was defined as the time from when the patient first joined the program to IBD-related healthcare utilization events, loss of follow-up in the electronic health records, or the end of the study period, whichever occurred earliest. RESULTS Among 280 eligible patients, the median SVI was 0.288 (IQR 0.121-0.433) (Figure 1). Among the low SVI group, 16.4% experienced an IBD-related ED visit/hospitalization, 20.0% sent an urgent message, and 10.0% received a CT scan. Among the high SVI group, 23.6% experienced an IBD-related ED visit/hospitalization, 26.4% sent an urgent message, and 12.9% received a CT scan. High and low SVI groups (reference) were not significantly different in their healthcare utilization: ED visit/hospitalization (HR 1.66 [95% CI 0.96-2.89]), sending an urgent message (HR 1.62 [95% CI 0.94-2.70]), and CT scan use (HR 2.31 [95% CI 0.98-5.47]), after adjusting for confounders (Table 1). CONCLUSION IBD-related healthcare utilization was not associated with social vulnerability at the census tract level in this cohort. The lack of statistical significance was likely due to the cohort’s low sample size and lack of demographic variability (92% white and 96.8% non-Hispanic). Additional research with a larger and more diverse sample may help clarify the association between SVI and outcomes.

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