长沙市唐氏综合征患者经济负担及女性照护者心理与社会歧视评估  

Economic burden of Down syndrome patients and psychological and social discrimination to female caregivers in Changsha

作　　者：王楠[1] 周世豪[2] 王顺尧 旷洋[2] 祖月娥[2] 解若彬 杨梦月 彭欢欢 刘激扬 贺骏[2] Wang Nan;Zhou Shihao;Wang Shunyao;Kuang Yang;Zu Yue-e;Xie Ruobin;Yang Mengyue;Peng Huanhuan;Liu Jiyang;He Jun(School of Public Administration,Hunan University,Changsha,Hunan 410006,China;Changsha Maternal and Child Health Care Hospital,Changsha,Hunan 410007,China;BGI Shenzhen Co.,Ltd.,Shenzhen,Guangdong 518083,China;Changsha First Hospital,Changsha,Hunan 410005,China)

机构地区：[1]湖南大学公共管理学院,长沙410006 [2]长沙市妇幼保健院,长沙410007 [3]深圳华大基因股份有限公司,广东518083 [4]长沙市第一医院,长沙410005

出　　处：《中华医学遗传学杂志》2022年第1期11-15,共5页Chinese Journal of Medical Genetics

基　　金：湖南省自然科学基金(2019JJ50681)。

摘　　要：目的对长沙市的唐氏综合征(Down syndrome,DS)疾病负担进行估算,从女性角度对DS患者主要照护者的心理负担及受社会歧视程度进行评估。方法2020年3月,对居住在长沙地区且志愿参与的DS患者家庭进行深度访谈及问卷调查。DS的经济负担测算包括直接成本、间接成本和福利保障性收入。使用斯坦福心理幸福感(Psychological Wellbeing,PWB)量表分析DS患者主要照护者的心理负担及受社会歧视程度。结果基于对81位DS患者的主要照护人的系统调查,我们发现长沙地区DS患者例均生命周期经济负担为498.57万元,其中患者及照护者的劳动力损失为主要的经济负担来源。此外,DS患者主要照护者绝大多数为女性。由于需要照护患者,女性照护者一方面面临显著的生产力成本损失,另一方面也面临严重的心理负担和社会歧视。结论由于目前对DS无有效治疗方法,仅能通过生活照护和教育来改善患者的生活水平,因此,提高患者的社会福利保障水平,增加对女性照护群体的社会支持,对减轻DS家庭社会经济负担具有重要的意义。此外,持续加强DS的产前筛查与诊断,积极预防患者的出生,可以有效降低疾病对社会造成的经济负担与不良影响。Objective To estimate the social and economic burden of Downs syndrome for patients and their families residing in Changsha,China.Methods An 160-item self-administered questionnaire was designed and distributed to the primary caregivers of the patients in March 2020.A total of 81 eligible participants had completed the questionnaire,among which 20 were excluded for incomplete data.A patient perspective was taken to estimate the economic burden of the disease.The social impact of the disease on the patient’s family was evaluated through questions adapted from the Stanford Psychological Wellbeing(PWB)Scale.Results The estimated life-course cost of a Downs syndrome patient in Changsha is 4985659 RMB,with the patient and caregiver’s loss of income taking the greater proportion.In addition,as the majority of the patients’primary caregivers,female caregivers experienced not only considerable financial hardship caused by the care provision,but also a significant amount of psychological pressure and social discrimination.Conclusion Increased level of social welfare for the patients and social support for their female caregivers are essential for reducing economic burden and improving their quality of life in the area.In addition,prenatal screening and diagnosis for Downs syndrome are important for reducing both the social and economic burden of the disease by preventing its occurrence.

关 键 词：唐氏综合征 疾病负担 社会经济影响 产前筛查 

分 类 号：R596.1[医药卫生—内科学] R1[医药卫生—临床医学]