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- W3085610203 abstract "Clinical and genetic characteristics of Gaucher disease (GD) have been widely discussed, while few studies assessed patients’ health-related quality of life (HRQoL). This study aimed to explore the HRQoL among Chinese adult patients with GD and to determine its association with Imiglucerase replacement therapy, medication expenses, social support levels and active lifestyle. Self-administered survey was given to all 134 fully-funded patients with sufficient Imiglucerase medication, and to all adult patients in the China Gaucher Disease Association. HRQoL was measured by a validated Chinese version of EQ-5D utility. Social-demographic features, medical expenses on GD, as well as Imiglucerase usage were asked in the survey. Social support was measured from four domains: emotional, tangible, informational, and social-relational. Active lifestyle (AL) was measured by a self-constructed 5-point Likert Scale with 7 questions. Comparing to the general Chinese population with chronic diseases (Mean: 0.91; SD: 0.12), the 126 surveyed adults with GD had a 19% lower HRQoL (Mean: 0.74; SD: 0.21). Mean utility was 0.62 (SD: 0.19) among the 30 unmedicated patients, and was significantly lower than the 96 medicated patients (Mean: 0.78; SD: 0.20). Multivariate linear regression model showed that catastrophic health expenditure and presence of complications were negatively associated with HRQoL. Apart from Imiglucerase replacement therapy, emotional, informational and social-relational social support were among the protective factors of HRQoL. The influence of social supports became insignificant when adding AL into the model, indicating the mediation effect of AL. Other social-demographic factors including age, gender, and hukou status had no independent association with HRQoL. This study emphasized the low HRQoL among Chinese adult patients with GD. In addition to Imiglucerase replacement therapy and complications, studies and programs on QoL may be aware of the social determinants of QoL, including emotional, informational and companionship support, as well as active lifestyle." @default.
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- W3085610203 date "2020-09-01" @default.
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- W3085610203 title "PRO14 Quality of Life in Patients with Gaucher Disease and Factors Associated: A Study on Adult Patients in China" @default.
- W3085610203 doi "https://doi.org/10.1016/j.vhri.2020.07.509" @default.
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