Assessing the Impact of Digital Ecosystem Engagement on Outcomes in Sickle Cell Disease (SCD) Patients
Author(s)
Ashley Lai, BSc1, Kim Summers, BSc, MSc, PhD1, Orlando Agrippa, BSc, MBA1, Kofi A Anie, PhD, MBE2, Paul Telfer, MD, FRCP3, Sanne Lugthart, MD4.
1Sanius Health, London, United Kingdom, 2Haematology and Sickle Cell Centre, London North West University Healthcare NHS Trust & Imperial College London, London, United Kingdom, 3Royal London Hospital, Barts Health NHS Trust, London, United Kingdom, 4University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, United Kingdom.
1Sanius Health, London, United Kingdom, 2Haematology and Sickle Cell Centre, London North West University Healthcare NHS Trust & Imperial College London, London, United Kingdom, 3Royal London Hospital, Barts Health NHS Trust, London, United Kingdom, 4University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, United Kingdom.
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 to support proactive 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.
METHODS: 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.
RESULTS: 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<0.05).In 2024, the average VOCs per patient were 2.8 (1+ years), 3.5 (2+ years), and 1.8 (3+ years). The percentage of patients reporting ≥1 VOCs was 23% (1+ years, n=16/69; 2+ years, n=42/184) and 19% (3+ years, n=12/62).
CONCLUSIONS: 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.
METHODS: 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.
RESULTS: 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<0.05).In 2024, the average VOCs per patient were 2.8 (1+ years), 3.5 (2+ years), and 1.8 (3+ years). The percentage of patients reporting ≥1 VOCs was 23% (1+ years, n=16/69; 2+ years, n=42/184) and 19% (3+ years, n=12/62).
CONCLUSIONS: 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.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
PT38
Topic
Patient-Centered Research
Topic Subcategory
Patient Engagement, Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Systemic Disorders/Conditions (Anesthesia, Auto-Immune Disorders (n.e.c.), Hematological Disorders (non-oncologic), Pain)