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我们需要做得更好:对癌症生存和生育力保存的在线患者信息的可读性分析。

We need to do better: Readability analysis of online patient information on cancer survivorship and fertility preservation.

机构信息

Department of Internal Medicine, Jacobi Medical Center, Bronx, NY, United States.

Department of Hematology and Oncology, Jacobi Medical Center, Bronx, NY, United States.

出版信息

J Cancer Policy. 2021 Jun;28:100276. doi: 10.1016/j.jcpo.2021.100276. Epub 2021 Feb 9.

Abstract

OBJECTIVE

National Institute of Health recommends that patient education material should be written at no greater than 6-grade level. Cancer survivorship and fertility preservation discussion with patients is recommended by many national societies and being done more frequently. We sought to analyze online patient information on cancer survivorship and fertility preservation to see if they meet the criteria set by national guidelines.

METHODS

Online patient information on cancer survivorship and fertility preservation was collected and analyzed by six of the most common readability tests. Only websites in English and free to access were used.

RESULTS

A total of 15 separate websites for cancer survivorship and fertility preservation was used. All websites failed to meet national guidelines. Cancer survivorship information was written at a high school senior and a 12-grade level. Fertility preservation information was written at a high school-senior and junior college level.

CONCLUSION

Online patient information on cancer survivorship and fertility preservation did not meet national guidelines. Testing across six of the most used readability indexes showed that information is challenging to understand for the general patient population.

POLICY STATEMENT

This article shares an insight into the complex and growing fields of cancer survivorship and fertility preservation. Educating patients about their condition is critical and improves outcomes and participation in shared decision making. Healthcare policy should focus on implementing a system that will provide culturally and linguistically appropriate information in the community for patients about their disease.

摘要

目的

美国国立卫生研究院建议,患者教育材料的撰写难度不应超过 6 级。许多国家协会建议与患者讨论癌症生存和生育力保存问题,并更频繁地开展此类讨论。我们旨在分析癌症生存和生育力保存方面的在线患者信息,以确定其是否符合国家指南设定的标准。

方法

通过六种最常用的可读性测试收集和分析癌症生存和生育力保存方面的在线患者信息。仅使用英文且可免费访问的网站。

结果

共使用了 15 个单独的癌症生存和生育力保存网站。所有网站均未达到国家标准。癌症生存信息的撰写难度相当于高中高年级和 12 年级的水平。生育力保存信息的撰写难度相当于高中高年级和大专水平。

结论

癌症生存和生育力保存方面的在线患者信息不符合国家标准。六种最常用的可读性指标测试表明,这些信息对普通患者群体来说难以理解。

政策声明

本文深入探讨了癌症生存和生育力保存这两个复杂且不断发展的领域。教育患者了解其病情至关重要,这可以改善其治疗效果并提高其参与共同决策的程度。医疗保健政策应侧重于实施一项系统,以便在社区中为患者提供与其疾病相关的文化和语言适宜的信息。

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