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。
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.
作者
陈馨仪
符晓
王安石
李春生
张滨
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)
基金
2019年重庆市医疗保险研究会资助项目“重庆市罕见病的医保策略研究”。
关键词
罕见病
医疗保障
用药可及性
rare diseases
medical security
access to medication
