Health-Related Quality of Life and Associated Factors Among Hemophilia Patients: Single Center Experience from Ethiopia

OBJECTIVES: To assess the health-related quality of life (HRQoL) and its associated factors among hemophilia patients.

METHODS: Institutional based cross-sectional study was conducted from March 23 to May 16, 2023, among 105 hemophilia patients attending the hematology clinic of Tikur Anbessa Specialized Hospital using piloted European Quality of Life Group’s 5-Domain Questionnaires 5 Levels (EQ-5D-5L) and Euro Quality of Life Group’s Visual Analog Scale (EQ-VAS) instruments. Data were analyzed by using SPSS version 27.0 and p<0.05 was declared as statistically significant. determined at p<0.05. Kruskal-Wallis and Mann-Whitney U tests were employed to determine how patient characteristics were associated with differences in the median score of EQ-5D-5L and EQ-VAS.

RESULTS: The median age was 20 (IQR16-25) years. Fifteen-seven (54.3%) patients have visited the emergency room and a quarter of them was admitted to the hospital in the last year. The majority had heavy bleeding in the past year 81(77.1%) and it occurred four times in 74 patients. Pain/discomfort dimension is the most frequently (77.1%) reported problem and followed by performing usual activities (69.5%), whereas the self-care domain (41.9%) was the least reported problem. The median (IQR) EQ-5D-5L utility and EQ-VAS scores were 0.86 (0.590.91) and 75(60.0-80.0), respectively. The mean (SD) of EQ-VAS and utility index are 69.1±17.1 and 0.71± 0.31 respectively. The age of the patients was significantly associated with the median of both EQ-5D-5L utility and EQ-VAS (p=0.001; 0.023). The payment method also showed a significant association with the median EQ-VAS (P=0.005).

CONCLUSIONS: The overall EQ-5D-5L utility and EQ-VAS of hemophilia patients were moderate. Age and service payment methods were shown to affect significantly the HRQoL of hemophilia patients and interventional strategies to improve patients’ HRQoL should consider the age of patients and healthcare payment methods.