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罕见病患者较差的身体状况与疾病治疗和管理已成为重要的全球公共卫生问题.目前,全球范围内针对罕见病患者诊疗的实践调查较少.本研究旨在调查中国罕见病患者的医疗服务利用、经济负担和健康状况.本研究针对罕见病患者开展了问卷调查.基于调查结果,研究首先对患者的社会经济学特征、医疗服务利用情况、经济负担和健康状况进行了描述性统计分析.研究同时采用Logistic回归探索影响患者自评健康的因素.本研究纳入了982名罕见病患者,涉及81种罕见病.58.2％的患者曾被误诊,35.2％的患者被误诊4次以上,65.8％的患者前往医院就医.92.1％的患者接受了治疗并产生医疗费用支出,其中98.7％的患者因就医而负债.86.8％的患者的自评健康为中等及中等以下.经济状况、性别、年龄、职业和家庭人口数等因素与患者健康状况显著相关.通过本研究发现,中国罕见病患者的医疗服务利用可及性、医疗费用可负担性及健康状况较差.基本医疗保险在提高罕见病患者的医疗服务利用率和医疗费用的负担能力方面没有发挥作用.提高罕见病患者的健康状况需要社会支持.“,”Many patients with rare diseases not only suffer from more severe conditions but often receive less disease management,which is one significant public health concem globally.Few practice-based surveys focus on the care of patients with rare diseases.In the present study,we aimed to investigate medical service utilization,economic burden and health status of patients with rare diseases in China.A cross-sectional questionnaire survey focusing on patients with rare diseases was conducted.Descriptive analysis was conducted to examine the sociodemographic characteristics,medical service utilization,economic burden and health status.Logistic regression analysis was applied to explore influencing factors of self-rated health.A total of 982 patients with 81 types of diseases were included in this survey.We found that 58.2％ of patients experienced misdiagnosis,and 35.2％ of the patients were misdiagnosed for at least five times.Moreover,65.8％ of patients traveled to hospitals to seek medical services,and 92.1％ of patients paid expenses for their treatment.However,only 1.3％ of patients could afford their medical expenditure without debts,and 86.8％ of patients regarded their health status as bad or moderate.Significant factors correlated with health status were economic status,gender,age,employment and household size.From this study,the accessibility of medical service utilization,the affordability of medical economic burden,and the condition of health status for patients with rare disease in China were considerably poor.Basic medical insurance did not play its role in improving the utilization of medical services and the affordability of medical costs.Social support should be encouraged to improve patients' health status.