Abstract Number: PB0932
Meeting: ISTH 2020 Congress
Theme: Hemophilia and Rare Bleeding Disorders » Hemophilia - Clinical
Background: HA is a disorder characterized by deficiency in clotting FVIII producing bleeding events, primarily musculoskeletal, leading to arthropathy and impacting patients and caregivers` daily lives.
Aims: To describe the psychosocial impact of HA without inhibitors in patients/caregivers and provide an overview of the variables that most affect quality of life (QoL).
Methods: A multidisciplinary scientific committee of experts in HA, including hematologists, a psychologist and a caregiver designed this study. Those different points of view developed a new and enlightening study design where technology (app & wearable) will collect accurate data from participants, producing valid scientific evidence for the Haemophilia community.
The primary objective will be measured with a maladjustment scale. Secondary objectives will be included to assess the sociodemographic profile, QoL, work/school productivity and absenteeism, functionality, pain and use of analgesia, anxiety/depression and physical activity to assess the impact of the disease.
The study includes the same objectives, when relevant, on the caregivers; understanding caregiver as the person in the environment of patient who shares the burden of the disease.
A sample of 100 patients with Haemophilia A (PwHA) and up to 100 caregivers will be followed for 1 year. The design and schedule of assessment is described in figure 1.
Results: This study is in progress. It has been approved by recognized Ethics Committee and it is being run in approximately 20 Hospitals in Spain to obtain a representative sample of the Spanish population (22 different levels hospital from 17 spanish regions).
Conclusions: Therefore, this is the first study linking cost-utility and social impact of PwHA and their caregivers to provide relevant information to the Haemophilia community and contribute to improving clinical practice and patient care in PwHA in Spain.
[Study visit scheme]
To cite this abstract in AMA style:
Mingot-Castellano ME, García-Dasí M, Alvarez-Roman MT, Nuñez R, Etxaide A, Guerra I, Urech M. Prospective, Non-Interventional Study to Assess the Burden in Adolescents and Adults with Haemophilia A (HA) without Inhibitors and their Caregivers in Spain – Hemolife Study [abstract]. Res Pract Thromb Haemost. 2020; 4 (Suppl 1). https://abstracts.isth.org/abstract/prospective-non-interventional-study-to-assess-the-burden-in-adolescents-and-adults-with-haemophilia-a-ha-without-inhibitors-and-their-caregivers-in-spain-hemolife-study/. Accessed October 2, 2023.« Back to ISTH 2020 Congress
ISTH Congress Abstracts - https://abstracts.isth.org/abstract/prospective-non-interventional-study-to-assess-the-burden-in-adolescents-and-adults-with-haemophilia-a-ha-without-inhibitors-and-their-caregivers-in-spain-hemolife-study/