Digitally supported, patient-initiated care: Maintaining control of inflammatory bowel diseases while achieving high patient satisfaction

Abstract

Background: The increasing prevalence of inflammatory bowel disease (IBD) and constrained clinical resources necessitate a shift from fixed-interval outpatient visits towards patient-initiated, needs-based follow-up. Real-world evidence on whether such transitions maintain disease control and achieve patient acceptance remains limited. In 2024, Aalborg University Hospital (Denmark) transitioned all patients with IBD not receiving biological therapy to a digitally supported, patient-initiated monitoring model. We aimed to evaluate the quality of care and patient satisfaction after the transition. Methods: This pre-post quality improvement study included 966 patients with IBD (Crohn's disease (CD): n = 279; ulcerative colitis (UC): n = 687). Clinical data, disease activity scores, faecal calprotectin levels, and health-related quality of life were obtained from the GASTROBIO web-based regional database for two years before and up to two years after the transition. Patient satisfaction was assessed via a questionnaire adapted from the validated Danish “LUP survey”. Results: Entries of patient reported outcomes (PROs) and faecal calprotectin sampling increased following transition. The proportion of patients in faecal calprotectin-defined remission increased in both CD (63 % to 76 %; p = 0.01) and UC (62 % to 70 %; p = 0.04), while disease activity scores remained stable. Health-related quality of life improved in both CD (p = 0.02) and UC (p < 0.01). Of 966 eligible patients, 371 (38 %) completed the satisfaction survey; the majority preferred the new model over standard of care (CD: 77 %; UC: 84 %) and rated satisfaction as high or very high (CD: 66 %; UC: 71 %). Higher satisfaction correlated with better health-related quality of life in both groups (CD: Spearman's ρ = − 0.22, p = 0.05; UC: ρ = − 0.18, p = 0.01). Conclusion: A patient-initiated, digitally supported remote monitoring model maintained disease control, improved health-related quality of life, and achieved high patient satisfaction in a large real-world IBD cohort. These findings support the feasibility and scalability of needs-based IBD follow-up underpinned by an integrated digital infrastructure.