Health-Related Quality of Life of Patients With Haemophilia - A Cross-Sectional Survey in the Northeast of China

Abstract Introduction: Haemophilia is a hereditary, chronic, and hemorrhagic disorder caused by a deficiency in coagulation factors. Long-term spontaneous bleeding of joints and soft tissues can seriously affect the quality of life of patients. Objectives: The study aimed to assess the health-related quality of life of patients with haemophilia and associated factors. Methods: A snowball sampling strategy was adopted to select study participants. Eligible participants were those who were 18 years or older and had mild, moderate or severe haemophilia. They were asked to self-complete a questionnaire, collecting data regarding their sociodemographic characteristics, target joint status, and health related quality of life measured by the EQ-5D-5L. Results: The respondents reported a mean EQ-5D utility score of 0.51 (SD=0.34). Those with severe haemophilia had a lower utility score than those with mild/moderate haemophilia (0.46±0.37 vs 0.56±0.30, p =0.737). The linear regression analyses showed that older age (>25 years), two or more target joints, not working, low levels of knowledge of the disease, and borrowing money to pay for medical treatments were associated with lower EQ-5D utility scores . Conclusion: Low health related quality of life of haemophilia patients is evident in China. Social support needs to be strengthened to address this issue.