罕见病患者社会支持与生命质量的关系研究

目的:利用2016年中国罕见病群体生存状况调查数据,通过分析罕见病患者生命质量各维度现状及其与社会支持的关系,为完善罕见病患者社会保障政策提供参考。方法:评价工具采用WHOQOL-BREF量表,运用滚雪球抽样调查方法,通过网络和电话调查方式收集数据,采用t检验分析与中国常模数据进行比较,并使用线性回归模型考察非正式、正式社会支持与罕见病患者生命质量的关系。结果:罕见病患者生命质量的各维度得分(生理、心理、社会、环境领域)均显著低于中国常模正常组和疾病组的生命质量评价得分,说明罕见病对居民的生命质量负面影响显著。非正式和正式社会支持与罕见病患者生命质量相关,非正式社会支持水平越高,患者各领域的生命质量越好;曾接受过社会帮扶的患者,心理领域和社会领域的生活质量水平高于未曾接受的患者。结论:改善患者的社会支持水平,完善罕见病的社会保障政策,对提高患者的生命福祉有一定的意义。

Study on the relationship between social support and quality of life among patients with rare diseases

Objective:To analyze the status quo of various dimensions of life quality of patients with rare diseases and the relationship between those dimensions and social support in order to introduce the life quality evaluation into the policies for social support and social welfare intervention for patients with rare diseases. Methods:Data from 2016 sample survey for survival status among people with rare diseases in China were used and the current status of quality of life among people with rare diseases and its association with formal and informal social support were examined using the WHOQOL-BREF scaleas the evaluation tools. T-test analysis was used to compare the score of quality of life among people with rare diseases with the Chinese standard data. Linear regression analysis modelwas applied to investigate the relationship between formal and informal social support and quality of life. Results:The scores of all domains of life quality among people with rare diseases were significantly lower than those of healthy and standard disease groups. This indicates that rare disease had a significant negative impact on the quality of life of residents. Formal and informal social support was found significantly associated with quality of life among people with rare diseases. The results of this research showed that people with rare diseases whose higher level of informal social support were likely to have better quality of life.The quality of life of patients who have social support had a higher score for psychological and social domain on quality of life than that of those who never received the support. Conclusions:Promoting social support among people with rare diseases and improving social security systems for rare diseases may benefit well beings of people with rare diseases.