PB0684 - Quality of life in patients & caregivers living with hemophilia A without inhibitors in spain, interim analysis of the HEMOLIFE study

Monday, June 26, 2023

18:30 – 19:30 ET

Room: Exhibition

Presenting Author(s)

Maria Teresa Alvarez-Román, MD, PhD

Associate Professor
Department of Hematology, University Hospital La Paz, Autonoma University of Madrid, Madrid, Spain
Madrid, Madrid, Spain

Co-Author(s)

IS

Inmaculada Soto

Hematology Deparment
Hospital Universitario Central de Asturias
Oviedo, Asturias, Spain
MG

María Garcia

Psychologist
General Health Psychologist
Valencia, Comunidad Valenciana, Spain
RN

Ramiro José Núñez Vázquez

Hematology Department
Hospital Universitario Virgen del Rocío. Instituto de Biomedicina de Sevilla (IBIS), Sevilla, Spain.
Sevilla, Andalucia, Spain
LQ

Laura Quintana

Hematology Deparment
Hospital Universitario Doctor Negrín
Canarias, Canarias, Spain
OB

Olga Benítez, MD

Hematology Deparment
Vall d'Hebrón Barcelona Hospital Campus
Barcelona, Catalonia, Spain
Francisco José López Jaime, MD

Hematologist
Hemostasis and Thrombosis Unit, Regional University Hospital of Málaga, IBIMA, Málaga, Spain.
Málaga, Andalucia, Spain
LE

Laura Entrena

Hematology Deparment
Hospital Universitario Virgen de las Nieves
Granada, Andalucia, Spain
IG

Itziar Guerra

Medical Manager
Roche Farma
Madrid, Madrid, Spain
HD

Hortensia De la Corte-Rodríguez

Department of Physical and Rehabilitation Medicine
La Paz University Hospital
Madrid, Madrid, Spain

Background: Haemophilia is a disease with an impact on the sufferer and their environment interfering with their daily lives. Joint damage remains a major complication that is widely accepted as one of the most debilitating symptoms and has a significant negative impact on the quality of life (QoL).

Aims: We present the baseline results related to QoL of patients and caregivers participating in HEMOLIFE.

Methods: Multicenter, prospective, observational study to describe changes in socio-occupational impact over a 12-month period in patients ≥ 12 years with moderate or severe haemophilia A without inhibitors and their caregivers. Informed consent and approval by ethics committee obtained. QoL has been collected using Haemo-QoL, Haemo-QoL-SF for adolescents aged 12-17 years and EQ-5D-5L for caregivers. Functional assessment (HAL) also included.

Results: The study included 81 patients with a mean age of 33 years, 83% had severe and 17% moderate haemophilia. All patients were receiving prophylactic treatment with plasma or recombinant factor VIII (51%), extended half-life factor VIII (31%) and emicizumab (18%), and in 80% the regimen was more than once a week. 12 caregivers were included in the study, most of them women (83.3.%). Of the 79 patients who completed the maladjustment scale, in 20.3% the score was greater than 12 points. Mean HAL sum score for adult and pediatric patients was 72.0 and 86.2. Patients Haemo-QoL results are shown in figure 1 and caregiver EQ-5D-5L table 1.

Conclusion(s): 82% participants received >1/week iv treatment. Treatment and hemophilia management are impacting the quality of life in youngest while in the older population physical health, sports or future are items with more impact in the QoL. There is room for improvement in the comprehensive management, and we encourage clinical teams to assess patients and caregivers’ QoL in routine visits.