生活质量(医疗保健)
医学
中国
社会福利
疾病
照顾负担
疾病负担
人民币
社会支持
比例(比率)
福利
老年学
精神科
心理学
护理部
物理
病理
法学
心理治疗师
量子力学
痴呆
政治学
作者
Nan Wang,Shihao Zhou,Shunyao Wang,Yang Kuang,Yuee Zu,Ruobin Xie,Mengyue Yang,Huanhuan Peng,Jiyang Liu,Jun He
出处
期刊:PubMed
日期:2022-01-10
卷期号:39 (1): 11-15
被引量:2
标识
DOI:10.3760/cma.j.cn511374-20210512-00404
摘要
To estimate the social and economic burden of Downs syndrome for patients and their families residing in Changsha, China.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.The estimated life-course cost of a Downs syndrome patient in Changsha is 4 985 659 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.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.
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