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

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(Psyc...

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

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.