中国罕见病患者社会支持情况及其影响因素分析  

Status and impact factors of social support for people with rare diseases in China

作　　者：高嘉敏 马正 GAO Jia-min;MA Zheng(Institute of Strategic Research,Peking University,Beijing 100871,China;不详)

机构地区：[1]北京大学战略研究所,北京100871 [2]北京大学光华管理学院 [3]中国食品药品国际交流中心

出　　处：《中国公共卫生》2022年第2期153-156,共4页Chinese Journal of Public Health

摘　　要：目的了解中国罕见病患者的社会支持情况及其影响因素,为罕见病患者提供有效的社会支持提供参考依据。方法于2016年2月采用滚雪球抽样方法采用自制调查问卷通过互联网或电话对1771例罕见病患者进行调查,分析罕见病患者的社会支持现状及其影响因素。结果中国罕见病患者的社会支持总分为(60.37±18.23)分,其中,工具性支持、讯息与情绪性支持、社会互助性合作支持、情感性支持和补偿性支持得分分别为(13.40±4.12)、(22.99±7.89)、(8.42±3.11)、(6.69±1.92)和(6.69±1.92)分;多元线性回归分析结果显示,已婚、离退休和学生罕见病患者的社会支持程度较高,年龄较大、文化程度小学及以上、无业、居住在农村和有并发症罕见病患者的社会支持程度较低。结论中国罕见病患者社会支持程度较低,此类患者的社会支持程度与年龄、文化程度、婚姻状况、职业、居住地和有无并发症等因素相关。Objective To analyze the status and correlated factors of social support for people with rare diseases in China.Methods We conducted an internet-or telephone-based survey among 1771 self-reported rare disease patients recruited with snow balling sampling during February 2016 in China.The Medical Outcomes Study Social Support Survey–Chinese Version(MOS-SSS)was applied to measure the social support for the patients.Descriptive statistics and linear regression were employed in data analysis.Results The total score of social support for the patients was 60.37±18.23 and domain scores were 13.40±4.12 for tangible support,22.99±7.89 for emotional/informational support,8.42±3.11 for positive social interaction,8.87±3.21 for affectionate support,and 6.69±1.92 for additional items,respectively.The results of multivariate stepwise linear regression analysis demonstrated that the rare disease patients being married,retired,and being a student were more likely to have a strong social support;while,those at elder age,with the education of primary school and below,unemployed,living in rural regions,and with disease complication were more likely to have a weak social support.Conclusion In China,the social support for rare disease patients is at a low level and associated with the patients'age,education,marital status,occupation,residence,and whether having complicated disease.

关 键 词：社会支持 罕见病患者 影响因素 

分 类 号：R181.37[医药卫生—流行病学]