PB0499 - Health-Related Quality of Life and its Associated Factors among Hemophilia Patients: Experience from Ethiopian Hemophilia Treatment Centre

Background: Haemophilia is a hereditary, chronic and hemorrhagic disorder caused by a deficiency in coagulation factors. Long-term spontaneous bleeding and soft tissues can have a significant negative effect on the quality of life of the patient.

Aims: The study aimed to assess health-related quality of life (HRQoL) and its associated factors in Ethiopian patients with hemophilia.

Methods: A cross-sectional survey was conducted among patients with hemophilia at Tikur Anbessa Specialized Hospital (TASH) in Addis Ababa, Ethiopia. The European Quality of Life Group’s (5-Domain Questionnaires at Five Levels (EQ-5D-5L) and Euro Quality of Life Group’s Visual Analog Scale (EQ-VAS)) instruments were used to assess HRQoL. We applied the Krukal-Wallis and Mann-Whitney U tests to determine the differences in EQ-5D-5L and EQ-VAS utility scores between patient groups. A multivariate Tobit regression model was used to identify factors associated with HRQoL. Statistical analyses were performed using STATA version 14, and statistical significance was determined at p < 0.05.

Results: A total of 105 patients with hemophilia participated in the study, with a mean (standard deviation (SD) age of 21.09 (±7.37) years. The median (IQR) EQ-5D-5L utility and EQ-VAS scores were 0.86 (0.59–0.91) and 75 (60.0–80.0), respectively. Age was significantly negatively associated with the EQ-5D-5L utility index and EQ-VAS (β = -0.020, 95 CI =-0.034, -0.007) and β =-0.974, 95% CI =-1.72, 0.225), respectively. Duration since hemophilia diagnosis (β-0.011, 95 CI%, 0.001-0.023), and living out of Addis Ababa (β= -0.128, 95 CI%, -0.248-, -0.007) were also significantly negatively associated with the EQ-5D-5L utility index.

Conclusion(s): The median EQ-5D-5L utility and EQ-VAS scores of patients with hemophilia were 0.86 (0.59–0.91) and 75 (60.0–80.0), respectively. HRQoL may be improved by providing factor concentrates, decentralizing HTCs, increasing awareness of bleeding disorders among health professionals, and providing psychosocial support to affected patients.