Ruiz Sienna, Mintz Rachel, Sijecic Amela, Eggers Michelle, Hoffman Aubri, Woodard Terri, Bjonard Kari Louise, Hoefgen Holly, Sandheinrich Taryn, Omurtag Kenan, Housten Ashley J
Washington University in St. Louis.
The University of Texas at Austin.
Res Sq. 2023 Feb 16:rs.3.rs-2587513. doi: 10.21203/rs.3.rs-2587513/v1.
Purpose 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. Methods 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. Results 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. Conclusions 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. Implications for Cancer Survivors: 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.
目的 生育力保存是青少年和青年癌症幸存者中一个日益重要的话题，但相关治疗的利用率仍然较低，这可能是由于缺乏认识和理解。青少年和青年广泛使用互联网，有人提议利用互联网填补知识空白，推进高质量、更公平的医疗服务。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。方法 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，以及临床相关主题的涵盖情况。结果 在68个符合条件的网站中，大多数质量较低，写作水平相当于大学阅读水平，并且几乎没有年轻患者认为有吸引力的功能。网站提及更多的是常见的生育力保存治疗方法，而不是有前景的实验性治疗方法，并且可以通过提供成本信息、社会情感影响以及其他与公平性相关的生育主题来加以改进。结论 目前，大多数生育力保存网站是关于青少年和青年患者的，但并非为他们而设。需要高质量的教育网站，这些网站要涉及对青少年和青年重要的结果，优先提供注重公平性的解决方案。对癌症幸存者的影响：青少年和青年幸存者难以获取专为满足他们需求而设计的高质量生育力保存网站。需要开发临床全面、阅读水平合适、具有包容性且有吸引力的生育力保存网站。我们提出了具体建议，未来的研究人员可利用这些建议开发能够更好地服务青少年和青年群体并改善生育力保存决策过程的网站。
