The home care delivery program in hemophilia: A descriptive italian multicentric study on patients, caregivers, and clinicians' points of view

Abstract

BACKGROUND: For patients affected by haemophilia, Patient Support Programs (PSPs) may be a support tool to assist patients and physicians in optimising treatment and improving disease management. PSP on the Pharmacokinetics (PK) service in Italy aims to support haemophilia A or B patients. MATERIALS AND METHODS: This report analyses data of patients and physicians who benefited from the PK program from October 2018 to October 2022. Data was collected by a web-based questionnaire and by telephone calls. We provide a descriptive report on the benefits of participation in the PK program for patients with haemophilia and medical professionals involved in their care. RESULTS: In total, 69.6% of the respondent patients stated they were very satisfied with the Program, and 97.7% said they would benefit from the service again. Among the interviewed physicians, 60% felt satisfied with the Program and thought it was helpful. CONCLUSION: Patient satisfaction remained consistently high, with sustained improvements in all aspects of life. Medical professionals also reported positive outcomes in their patient interactions and satisfaction with the Program. PSPs have empowered patients to manage their pathology, increasing their satisfaction with treatments and quality of life.

Keywords

• hemophilia
• home care
• patient support programs
• quality of life