PO033 - Compliance, Bleeding Episodes, and Quality of Life in Individuals with Hemophilia: Insights from the Use of Florio Haemo©

PO033

Compliance, Bleeding Episodes, and Quality of Life in Individuals with Hemophilia: Insights from the Use of Florio Haemo©

N. Kotsiou^1,*, A. Kouramba², P. Evangelidis¹, P. Kalmoukos¹, I. Leonidis¹, F. Kyrialani¹, Z. Ntova¹, I. Averkiou¹, S. Chissan¹, I. Eftychidis¹, E. Gavriilaki¹, O. Katsarou², S. Vakalopoulou¹

¹Hemophilia Center of Northern Greece, Thessaloniki, ²Blood Transfusion Service and National Reference Center for Congenital Bleeding Disorders, “Laiko” General Hospital, Athens, Greece

Introduction: Digital health technologies have become essential tools for real-time monitoring of individuals with hemophilia,enabling accurate recording of bleeding episodes,treatment adherence,and daily activities.Florio Haemo^© platform combines a patient-facing mobile application with a professional dashboard,allowing patients to record clinical data and healthcare providers to monitor progress remotely.This study presents data collected through the platform,focusing on adherence to personalized prophylactic regimens based on pharmacokinetic(PK) profiles,bleeding frequency and severity,self-reported pain,and quality of life(QoL) outcomes.The objective is to assess the clinical utility of the platform in optimizing individualized therapeutic management.

Methods: Adult patients with hemophilia A or B under prophylactic treatment and regular follow-up at two Hemophilia Centers in Athens and Thessaloniki were included.Personalized PK analyses were performed using the McMaster PopPK^© tool.Participants used Florio Haemo^© between January 2024 and May 2025 to record treatment adherence,bleeding and pain episodes,physical activity,and QoL data.The EQ-5D-5L questionnaire was employed to assess five health dimensions:mobility,self-care,usual activities,pain/discomfort,and anxiety/depression.

Results: Seventy-one patients were analyzed:60 with hemophilia A(48 severe, 12 moderate) and 11 with hemophilia B(10 severe, 1 moderate),with a mean age of 39.3±10.6 years.All individuals with hemophilia B received extended half-life(EHL) factors;among those with hemophilia A,6(10%) received standard half-life(SHL) and 54(90%) EHL factors.The median treatment adherence rate was 17%(IQR 8.0–34.5).The median annual bleeding rate(ABR) was 0 (IQR 0–1),with 69% patients using the bleeding recording feature in the app.Pain episodes were reported by 52.1% of users, and 18.3% used the activity feature, averaging 3,157 steps daily.The median EQ-5D-5L index was 89(IQR 79.5–92, n=41),and the median pain visual analog scale score was 2(IQR 1–3, n=37).

Discussion/Conclusion: Integration of real-world digital data into clinical care supports effective patient–clinician communication,enhances individualized treatment decisions,and promotes comprehensive disease management.The implementation of Florio Haemo^© in routine practice demonstrates potential to improve treatment outcomes and quality of life in individuals with hemophilia.

Disclosure of Interest: None declared