ENGAGING PATIENTS IN INFLAMMATORY BOWEL DISEASE CARE — WHAT DETERMINES ACTIVE PARTICIPATION?
Authors: Dang Nhu , Kwon Michelle , Kumar Soryan , Cradeur Michael , Zeven Katherine , Khunte Mihir , Marino Daniel , Tse Chung Sang , van Deen Welmoed , Lee Adrian , Kamp Kendra , Oberai Ridhima , Melmed Gil , Siegel Corey , Weaver Alandra , Shah Samir 
Published: January 2023

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 &lt;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.