Abstract

Abstract Background Remote management through online web-based services can reduce healthcare utilization and improve the quality of life and treatment adherence of IBD patients compared to standard care.However, the actual compliance and durability of remote follow-up protocols in IBD have not been well studied. Aim To describe the compliance with mobile-app patient-reported outcomes (PRO) questionnaires in a long-term monitoring program for IBD patients Methods Retrospective cohort study that included patients with Crohn’s Disease (CD) or ulcerative colitis (UC) treated at a tertiary center. Patients received questionnaires via the specialized smartphone app Datos Health™.The follow-up program included the following questionnaires: IBD-control,Patient-Reported Outcomes Measurement Information System (PROMIS-10), Short IBD Questionnaire (S-IBDQ), and Patient Reported Outcome-2 (PRO 2). Results 402 IBD patients were enrolled in the program; 299 (74.4%) had CD and 103 UC (25.6%). 187 of the study patients (46.5%) male, 16(0.04%) were naive to biological therapy, 189 (47%) received their first biological therapy. Median age as 35.68 (interquartile ratio (IQR)- 35.68-43.31) and mean disease duration 9.8 years (7-14). SIBDQ was sent for 515 (398-577) days,20 (15-23) questionnaires were sent, response rate was 23%. After 30 days -62(15.4%) of patients were still responding, 100 days- 36(9%), 1 year- 40(11.3%). PROMIS-10 was sent for a median of 482(365-574) days; 17(13-20) questionnaires were sent, response rate was 13%. After 30 days -27(6.7%) of patients were still responding, after 100 days- 21(5.2%) and after 1 year- 34 (8.5%). IBD-control was sent for a median of 515(397-584) days; 21(15-23) questionnaires were sent ,response rate was 22%. After 30 days -63 (15.7%) of patients were still responding, after 100 days- 37 (9.2%) and after 1 year- 40 (10%). PRO 2 was sent for a median of 361(144-447) days;107(47-140) questionnaires were sent, response rate-11% After 30 days-47(11.7%), after 100 days -23(5.7%) and after 1 year -36(9%) were still responding Figure 1: The response rate of filled questionnaires over time SIBDQ; Short IBD Questionnaire. PRO-2; Patient-Reported Outcomes 2. Promis-global 10; Patient-Reported Outcomes Measurement Information System . IBD-control. Conclusion Long-term follow-up of IBD patients with remote PRO is associated with low compliance and high withdrawal rates.Future design of such programs should accommodate patients' needs, incorporatE rapid rule-based feedback and devise a smart adaptive frequency strategy to avoid alert fatigue and increase compliance.

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