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-5Dutility(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-5Dutility scores. CONCLUSION: Low HRQoL of patients with haemophilia is evident in China. Social support needs to be strengthened to address this issue.

The impacts of knowledge, risk perception, emotion and information on citizens' protective behaviors during the outbreak of COVID-19: a cross-sectional study in China.

BACKGROUND: Individual protective behaviors play an important role in the control of the spread of infectious diseases. This study aimed to investigate the adoption of protective behaviors by Chinese citizens amid the COVID-19 outbreak and its associated factors. METHODS: An online cross-sectional survey was conducted from 22 January to 14 February 2020 through Wenjuanxing platform, measuring their knowledge, risk perception, negative emotion, response to official communication, and protective behaviors in relation to COVID-19. A total of 3008 people completed the questionnaire, of which 2845 were valid questionnaires. RESULTS: On average, 71% of respondents embraced protective behaviors. Those who made no error in the knowledge test (AOR = 1.77, p < 0.001) perceived the high severity of the epidemic (AOR = 1.90, p < 0.001), had high negative emotion (AOR = 1.36, p = 0.005), reported good health (AOR = 1.94, p < 0.001), paid high attention to the governmental media (AOR = 4.16, p < 0.001) and trusted the governmental media (AOR = 1.97, p < 0.001) were more likely to embrace protective behaviors after adjustments for variations in potential confounding factors. Women and older people were also more likely to embrace protective behaviors. No regional or educational differences were found in the adoption of protective behaviors. CONCLUSION: The majority of Chinese citizens embraced protective behaviors. Higher levels of protective behaviors are associated with higher knowledge, perceived severity, negative emotion, and attention to and trust in the official governmental media. Official governmental communication is the largest single predictor of protective behaviors.