中国罕见病患者的卫生服务利用及其影响因素分析

Analysis of the health service utilization among patients with rare diseases and the influencing factors in China

目的:分析我国罕见病患者的卫生服务利用和就医体验现状及其影响因素。方法:2016年2月利用自制调查问卷在互联网上对罕见病患者进行调查,采用描述性统计方法和Logistic回归进行分析。结果:在调查的1 771名罕见病患者中,66%的患者曾经被误诊过,80. 52%的患者在确诊后接受过相关的治疗。治疗费用过高是影响就医治疗的首位因素,其次是相关的药品和康复手段缺乏。年龄、性别、种族、受教育程度和医疗保险对患者是否接受过治疗没有显著性影响,有配偶、非农户口、学生、后天获得罕见病和有并发症的患者接受治疗的比例较高。结论:我国罕见病患者的误诊率较高,卫生服务利用率不高,治疗费用过高,同时,目前中国治疗手段缺乏仍需亟待解决。

Objective: The goal of this paper is to analyze the status quo of health service utilization and medical experience, as well as the influencing factors among patients with rare diseases in China. Methods: Patients with rare diseases were surveyed online using a self-designed questionnaire in February 2016, and the data are analyzed using descriptive statistical methods and logistic regression. Results: Among 1771 patients surveyed, 66% had been misdiagnosed before and 80.52% received related treatment after confirmed diagnosis. The high cost of treatment is the first factor affecting medical treatment, followed by the lack of related drugs and rehabilitation methods. Age, gender, race, education level and medical insurance have no significant effect on whether patients receive treatment or not. Patients with spouse, normal urban residents, students, patients with acquired rare diseases, and patients with complications have higher rate of receiving treatment. Conclusions: Among patients with rare diseases in China, the misdiagnosis rate is relatively high, which is related to the low utilization rate of health services as well as the high treatment cost. At the same time, the shortage of good therapeutic means and technical equipment is yet to be resolved in China.