Health-related quality of life of patients with haemophilia: a cross-sectional survey in the Northeast of China

Introduction Haemophilia is a hereditary, chronic and haemorrhagic 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. Objective The study aimed to assess the health-related quality of life (HRQoL) 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 HRQoL measured by the EQ-5D-5L(a tool developed by the European quality of life (EuroQol) Group). Results The respondents reported a mean EQ-5D(utility)(country-specific valuesets for the EQ-5D-5L) 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 HRQoL of patients with haemophilia is evident in China. Social support needs to be strengthened to address this issue.