Washington University in St. Louis, St. Louis, MO, USA.
The University of Texas at Austin, Austin, TX, USA.
J Cancer Surviv. 2024 Aug;18(4):1416-1425. doi: 10.1007/s11764-023-01386-1. Epub 2023 May 5.
Fertility preservation is an increasingly important topic in adolescent and young adult cancer survivorship, yet treatments remain under-utilized, possibly due to lack of awareness and understanding. The internet is widely used by adolescents and young adults and has been proposed to fill knowledge gaps and advance high-quality, more equitable care. As a first step, this study analyzed the quality of current fertility preservation resources online and identified opportunities for improvement.
We conducted a systematic analysis of 500 websites to assess the quality, readability, and desirability of website features, and the inclusion of clinically relevant topics.
The majority of the 68 eligible websites were low quality, written at college reading levels, and included few features that younger patients find desirable. Websites mentioned more common fertility preservation treatments than promising experimental treatments, and could be improved with cost information, socioemotional impacts, and other equity-related fertility topics.
Currently, the majority of fertility preservation websites are about, but not for, adolescent and young adult patients. High-quality educational websites are needed that address outcomes that matter to teens and young adults, with a priority on solutions that prioritize equity.
Adolescent and young adult survivors have limited access to high-quality fertility preservation websites that are designed for their needs. There is a need for the development of fertility preservation websites that are clinically comprehensive, written at appropriate reading levels, inclusive, and desirable. We include specific recommendations that future researchers can use to develop websites that could better address AYA populations and improve the fertility preservation decision making process.
生育力保存是青少年和年轻成年癌症幸存者中越来越重要的话题，但治疗方法仍未得到充分利用，这可能是由于缺乏认识和理解。互联网被青少年和年轻人广泛使用，并被提议用来填补知识空白，推进高质量、更公平的护理。作为第一步，本研究分析了当前在线生育力保存资源的质量，并确定了改进的机会。
我们对 500 个网站进行了系统分析，以评估网站功能的质量、可读性和吸引力，以及包括临床相关主题的情况。
在 68 个符合条件的网站中，大多数网站质量较低，阅读水平为大学水平，且包含年轻患者期望的功能较少。网站提到的生育力保存治疗方法比有前途的实验性治疗方法多，但可以通过成本信息、社会情感影响以及其他与公平相关的生育主题来改进。
目前，大多数生育力保存网站是关于青少年和年轻成年患者的，但并不完全是为他们设计的。需要开发高质量的教育网站，这些网站要针对青少年和年轻成年人关心的结果，优先考虑公平性的解决方案。
青少年和年轻成年癌症幸存者获得高质量、专为他们的需求而设计的生育力保存网站的机会有限。需要开发具有临床全面性、适当阅读水平、包容性和吸引力的生育力保存网站。我们包括了具体的建议，未来的研究人员可以使用这些建议来开发能够更好地满足 AYA 人群并改善生育力保存决策过程的网站。
