Assessing the Impact of Digital Ecosystem Engagement on Outcomes in Sickle Cell Disease (SCD) Patients

Abstract

Objectives: Sickle Cell Disease (SCD) is characterised by recurrent vaso-occlusive crises (VOCs), which significantly reduce patient quality of life and outcomes. Digital tools hold potential tosupportproactive self-management, enabling early intervention to prevent VOCs and hospitalisation. We would like to assess changes in clinical outcomes in an SCD patient cohort participation in the digital ecosystem. Method(s): We collected medical records and digital ecosystem (app) information from 315 SCD patients, stratified by engagement duration (1+ years, n=69; 2+ years, n=184; 3+ years, n=62). From enrolment in 2021, acute pain episodes from medical records (2019-2021) were assumed to reflect outcomes and compared with self-reported VOCs in the app (2022-2024). The data cut-off date was 09/12/2024. Result(s): The average compliance rate (patients reporting >=1 patient-reported outcome per month) was 52% for patients engaged for 1 year+, 53% for 2+ years, and 54% for 3+ years.Compared to pre-enrolment, the annual VOC rate post-enrolment decreased by 49% for patients engaged for 1+ year (from 3.3 to 1.8), 54% for 2+ years (from 4.5 to 2.1), and 81% for 3+ years (from 8.3 to 1.5), all statistically significantly (p=1 VOCs was 23% (1+ years, n=16/69; 2+ years, n=42/184) and 19% (3+ years, n=12/62). Conclusion(s): Long-term engagement in the digital ecosystem demonstrated the potential to improve patient outcomes, with reduced annual VOC rates and fewer reported VOCs among patients with longer engagement. Consistent app compliance rates across subgroups suggest the reduction in VOCs was unlikely due to decreased engagement, though possible missed recordings through this patient report-driven approach remain a key caveat. Future work will validate app data against medical records, and optimise patient engagement to ensure consistent reporting.Copyright © 2025