Inflammatory Bowel Disease (IBD) is a chronic condition of the bowel that affects over 1.5 million people in the United States. The recurring nature of the disease makes IBD patients' ideal candidates for patient-engaged care that is centered on enhanced self-management and improved doctor-patient communication. HealthPROMISE program is a unique cloud based PRO (patient reported outcomes) app and decision support dashboard that empowers both patients and providers with a more comprehensive and continuous assessment. The App is implemented at 5 IBD centers and undergoing pragmatic clinical trial at one academic medical center.Methods:
Participants were recruited after informed consent was obtained during face-to-face visits and were then randomized to either an interventional (i.e., HealthPROMISE) or control (i.e., education app) group. All patients completed intake questionnaires assessing disease severity, general health status, and demographic information. Patients in the HealthPROMISE arm are able to update their information and receive disease summary, quality metrics and a graph showing the trend of disease specific quality of life (SIBDQ) scores and resource utilization over time. Data is being collected in real time using the HealthPROMISE app from IBD patients at Mount Sinai and being compared with baseline electronic survey data as well as from historical data from UPMC. SIBDQ scores are being generated and analyzed to look into psychosocial domains.Results:
Of the 320 patients enrolled in the study at Mount Sinai Medical Center (MSMC), 162 were randomized to the intervention group and 158 to the control group (Females 49.1%; White 82.2%; Black 5.3%; Hispanics 9.1%; English as primary language 96.3%; Everyday Computer Usage 93.4%). Usage data showed that majority of patients (∼75%) continue to actively login in HealthPROMISE app after many months. In a self reported survey, 89.5% (17/19) of patients reported actively using HealthPROMISE app versus 27.7% (5/18) who reported actively using control app. Tension and fatigue were major drivers of poor QOL among MSMC patients as well as UPMC patients (historically collected data in paper) as shown in Figure 1. Looking at social determinants of health, we found that patients with College Education reported less symptom burden (29.2 versus 36.8, range 10–70; P < 0.01) and better QOL (0.8 versus 0.7; P < 0.01), an effect that remained significant in multivariable models. Overall QOL improved among HealthPROMISE patients within a median interval of 5 months (Fig. 2). Patients with less than College Education had similar improvement in QOL improvement.Conclusions:
Longitudinal PRO collection in IBD patients is feasible with high degree of adoption and engagement. Providers treating IBD patients need to perform continuous assessment of psychosocial distress as they are the major contributing factors to poor quality of life. High levels of engagement has potential to decrease the impact of social determinants on health of IBD patients.