[1]陈馨仪,符 晓,王安石,等.罕见病患者治疗及保障研究[J].卫生经济研究,2020,(09):40-42,46.
　CHEN Xin-yi,FU Xiao,WANG An-shi,et al.Research on the Treatment and Guarantee of Patients with Rare Diseases[J].Journal Press of Health Economics Research,2020,(09):40-42,46.
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罕见病患者治疗及保障研究
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卫生经济研究[ISSN:1004-7778/CN:33-1056/F]

卷:
期数:
2020年09期
页码:
40-42,46
栏目:
卫生服务
出版日期:
2020-08-26

文章信息/Info

Title:
Research on the Treatment and Guarantee of Patients with Rare Diseases
作者:
陈馨仪1; 符 晓1; 王安石2; 李春生2; 张 滨1
1.重庆医科大学公共卫生与管理学院，医学与社会发展研究中心，健康领域社会风险预测治理协同创新中心，重庆 400016
2.重庆市医疗保险研究会，重庆 401120
Author(s):
CHEN Xin-yi; FU Xiao; WANG An-shi; LI Chun-sheng; ZHANG Bin
School of Public Health and Management, Research Center for Medicine and Social Development,Innovation Center for Social Risk Governance in Health,Chongqing Medical University,Chongqing 400016,China
关键词:
罕见病; 医疗保障; 用药可及性
Keywords:
rare diseases; medical security; access to medication
分类号:
R197.1
文献标志码:
A
摘要:
目的：探索罕见病患者治疗和保障面临的主要困境及需求。方法：采用半结构式访谈法，访谈13位罕见病患者，运用Colaizzi 7 步分析法分析访谈资料。结果：罕见病患者面临的主要问题有：疾病临床诊治手段缺乏，医疗资源分布不均；用药可及性差且费用昂贵，医疗保障能力不足，患者经济负担沉重；社会支持基础薄弱。结论：尽快建立健全科学合理的罕见病保障体系，为罕见病患者提供生理、心理、社会等多个维度的支持，予以罕见病患者群体更多关注。
Abstract:
Objective To explore the main dilemmas and demands faced by patients with rare diseases in treatment and security.Methods The semi-structured interview method was used to interview 13 patients with rare diseases,and the interview data were analyzed using the Colaizzi 7-step analysis method.Results The main problems faced by patients with rare diseases including lack of clinical disease diagnosis and treatment,unbalanced distribution of medical resources,poor access to rare drugs and expensive fees,insufficient capabilities of medical security，heavy financial burden on patients,and weak foundation of social support.Conclusion To establish and improve a scientific and reasonable guarantee system for rare diseases as soon as possible,provide physical,psychological,and social support for patients with rare diseases,and give more attention to groups of patients with rare diseases.

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更新日期/Last Update: 2020-08-26