PO161 | A REGIONAL DIGITAL NETWORK FOR THE MANAGEMENT OF ACQUIRED HEMOPHILIA A: A MODEL FOR INTEGRATED CARE
Abstract
Background. Acquired hemophilia A (AHA) is a rare, potentially fatal autoimmune coagulopathy caused by the presence of neutralizing autoantibodies directed against factor VIII. It primarily affects older adults and is frequently underdiagnosed, resulting in diagnostic delays and fragmented care. This is associated with preventable bleeding complications, increased mortality, and rising healthcare costs. Despite the availability of effective hemostatic and immunosuppressive therapies, the long-term management of recurrent or refractory forms remains complex outside of specialized centers. Objectives. To establish a regional care pathway supported by a digital platform capable of connecting local and hospital services with a Hemophilia Reference Center, in order to accelerate diagnosis, guide initial treatment decisions, and improve the continuity and appropriateness of follow-up care. Methods. A secure digital platform was developed to connect emergency departments, hematology units, laboratories, local pharmacies, and primary care physicians with the Regional Hemophilia Reference Center in Palermo. The platform was designed based on actual clinical workflows and enables rapid teleconsultations in cases of suspected AHA, centralized interpretation of coagulation tests, and shared decision-making regarding hemostatic and immunosuppressive therapies. During follow-up, clinicians can update clinical data, bleeding events, treatments, and laboratory results in real time, allowing specialists to adjust treatment promptly. A dedicated patient section facilitates communication following discharge. Access to the platform is governed by differentiated authorization profiles and complies with current data protection regulations. Results. Development of the platform began on December 6, 2023, and regional implementation was completed in February 2025. Four physicians from four peripheral hospitals were involved—two from emergency departments and two from hematology units. Twelve specialist consultations for suspected AHA were conducted through the platform. Two patients with confirmed diagnoses were managed entirely through the shared care pathway—one identified in the emergency department and one in the hematology setting. After discharge, follow-up was ensured through regular clinical and laboratory updates entered by primary care physicians and reviewed by the referral center. In both cases, therapy was adjusted remotely, resulting in complete remission. In one patient, structured monitoring also enabled the diagnosis of a neoplasm during follow-up, highlighting the platform’s potential role in cancer surveillance as well, given the well-known association between AHA and neoplasms, which can sometimes be diagnosed after the onset of bleeding symptoms. In its first six months of operation, the platform improved communication between centers, strengthened continuity of care, and reduced unnecessary or inappropriate interventions. Conclusions. A digitally integrated care network can improve access to specialized expertise in rare diseases even when that expertise is centralized. In the AHA, it helps reduce diagnostic time, harmonize treatment decisions, and ensure structured long-term monitoring. This model can potentially be extended to other rare diseases, helping to improve equity of access, appropriateness of care, and efficiency of the National Health Service, as well as facilitating the collection of real-world data.
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BibTeX
@article{mattana2026po161,
title = {{PO161 | A REGIONAL DIGITAL NETWORK FOR THE MANAGEMENT OF ACQUIRED HEMOPHILIA A: A MODEL FOR INTEGRATED CARE}},
author = {Marta Mattana},
journal = {Bleeding, Thrombosis and Vascular Biology},
year = {2026},
month = oct,
url = {https://www.btvb.org/btvb/article/view/977},
note = {CC BY-NC},
}
RIS
TY - JOUR
TI - PO161 | A REGIONAL DIGITAL NETWORK FOR THE MANAGEMENT OF ACQUIRED HEMOPHILIA A: A MODEL FOR INTEGRATED CARE
AU - Marta Mattana
PY - 2026
DA - 2026/10/26
JO - Bleeding, Thrombosis and Vascular Biology
UR - https://www.btvb.org/btvb/article/view/977
AB - Background. Acquired hemophilia A (AHA) is a rare, potentially fatal autoimmune coagulopathy caused by the presence of neutralizing autoantibodies directed against factor VIII. It primarily affects older adults and is frequently underdiagnosed, resulting in diagnostic delays and fragmented care. This is associated with preventable bleeding complications, increased mortality, and rising healthcare costs. Despite the availability of effective hemostatic and immunosuppressive therapies, the long-term management of recurrent or refractory forms remains complex outside of specialized centers. Objectives. To establish a regional care pathway supported by a digital platform capable of connecting local and hospital services with a Hemophilia Reference Center, in order to accelerate diagnosis, guide initial treatment decisions, and improve the continuity and appropriateness of follow-up care. Methods. A secure digital platform was developed to connect emergency departments, hematology units, laboratories, local pharmacies, and primary care physicians with the Regional Hemophilia Reference Center in Palermo. The platform was designed based on actual clinical workflows and enables rapid teleconsultations in cases of suspected AHA, centralized interpretation of coagulation tests, and shared decision-making regarding hemostatic and immunosuppressive therapies. During follow-up, clinicians can update clinical data, bleeding events, treatments, and laboratory results in real time, allowing specialists to adjust treatment promptly. A dedicated patient section facilitates communication following discharge. Access to the platform is governed by differentiated authorization profiles and complies with current data protection regulations. Results. Development of the platform began on December 6, 2023, and regional implementation was completed in February 2025. Four physicians from four peripheral hospitals were involved—two from emergency departments and two from hematology units. Twelve specialist consultations for suspected AHA were conducted through the platform. Two patients with confirmed diagnoses were managed entirely through the shared care pathway—one identified in the emergency department and one in the hematology setting. After discharge, follow-up was ensured through regular clinical and laboratory updates entered by primary care physicians and reviewed by the referral center. In both cases, therapy was adjusted remotely, resulting in complete remission. In one patient, structured monitoring also enabled the diagnosis of a neoplasm during follow-up, highlighting the platform’s potential role in cancer surveillance as well, given the well-known association between AHA and neoplasms, which can sometimes be diagnosed after the onset of bleeding symptoms. In its first six months of operation, the platform improved communication between centers, strengthened continuity of care, and reduced unnecessary or inappropriate interventions. Conclusions. A digitally integrated care network can improve access to specialized expertise in rare diseases even when that expertise is centralized. In the AHA, it helps reduce diagnostic time, harmonize treatment decisions, and ensure structured long-term monitoring. This model can potentially be extended to other rare diseases, helping to improve equity of access, appropriateness of care, and efficiency of the National Health Service, as well as facilitating the collection of real-world data.
SN - 2785-5309
ER -