Gu Yichun, Wang Anqi, Tang Huan, Wang Haode, Jiang Yuji, Jin Chunlin, Wang Haiyin
Shanghai Health Development Research Center, Shanghai, People's Republic of China.
School of Public Health, Weifang Medical University, Weifang, Shandong, People's Republic of China.
Patient Prefer Adherence. 2023 Jul 24;17:1783-1797. doi: 10.2147/PPA.S416226. eCollection 2023.
In light of the limited availability of healthcare resources, providing universal access to healthcare is a challenging task. As a result, prioritizing healthcare services has emerged as a crucial issue. This study aims to explore the preferences of the public regarding healthcare prioritization for rare and common diseases. By examining public attitudes, this study seeks to inform government decisions concerning resource allocation and distribution within healthcare.
"Social preference" and "rare disease" were searched as MeSH terms in the electronic databases of Ovid Medline, Web of Science, Embase, and Econlit for articles published since their establishment, and the information on the characteristics of the articles and the results of social preferences for rare diseases were analyzed and summarized.
The public held predominantly neutral views on the setting of healthcare priorities for rare and common diseases. The results of the included studies showed that with all else being equal, no social preference for rarity was found, but when the public considered the proportional advantage of rare diseases or when the respondents were young, a social preference for rarity existed. In addition, the public weighed attributes such as the health benefits of treatments, the effectiveness of treatment options, the safety of treatment, equity, unmet needs, and disease severity in the process of setting of treatment priorities for rare diseases. Furthermore, in consideration of equity, the public showed a willingness to pay for rare diseases in spite of the high medical costs.
International studies on social preferences provide some evidence for the setting of healthcare priorities for rare diseases, and health policymakers should consider social preferences in an integrated manner in order to set healthcare priorities appropriately.
鉴于医疗资源有限，提供全民医疗服务是一项具有挑战性的任务。因此，对医疗服务进行优先级排序已成为一个关键问题。本研究旨在探讨公众对罕见病和常见疾病医疗优先级的偏好。通过研究公众态度，本研究旨在为政府在医疗资源分配和配置方面的决策提供参考。
在Ovid Medline、Web of Science、Embase和Econlit的电子数据库中，以“社会偏好”和“罕见病”作为医学主题词，检索自数据库建立以来发表的文章，并对文章特征信息以及罕见病社会偏好结果进行分析和总结。
公众对罕见病和常见疾病医疗优先级的设定大多持中立态度。纳入研究的结果表明，在其他条件相同的情况下，未发现对罕见病的社会偏好，但当公众考虑罕见病的比例优势或受访者较年轻时，存在对罕见病的社会偏好。此外，公众在为罕见病设定治疗优先级的过程中，会权衡治疗的健康效益、治疗方案的有效性、治疗安全性、公平性、未满足的需求以及疾病严重程度等属性。此外，出于公平考虑，尽管医疗成本高昂，公众仍表示愿意为罕见病支付费用。
关于社会偏好的国际研究为罕见病医疗优先级的设定提供了一些证据，卫生政策制定者应综合考虑社会偏好，以便合理设定医疗优先级。
