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Websites about, not for, adolescents? A systematic analysis of online fertility preservation information for adolescent and young adult cancer patients

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Abstract

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.

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Data availability

The data generated by this project are available from the corresponding author upon reasonable request.

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Funding

This project was funded, in part, by St. Jude Children’s Research Hospital, The Implementation Science Centers in Cancer Control (ISC3; Beau Biden Cancer Moonshot Initiative, NCI P50 CA244431), and Washington University and Siteman Cancer Center Institutional matching funds.

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Authors and Affiliations

  1. Washington University in St. Louis, St. Louis, MO, USA

    Sienna Ruiz, Rachel Mintz, Amela Sijecic, Michelle Eggers, Holly Hoefgen, Taryn Sandheinrich, Kenan Omurtag & Ashley J. Housten

  2. The University of Texas at Austin, Austin, TX, USA

    Aubri S. Hoffman

  3. The University of Texas MD Anderson Cancer Center, Houston, TX, USA

    Terri Woodard

  4. Riley Hospital for Children at Indiana University Health, Indiana University School of Medicine, Indianapolis, IN, USA

    Kari L. Bjornard

  5. St. Louis Children’s Hospital, St. Louis, MO, USA

    Taryn Sandheinrich

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  1. Sienna Ruiz
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Contributions

All authors contributed to the conceptualization of the manuscript. SR integrated the software, and SR and RM conducted the formal analysis, investigation (with AS), and data curation. ME, KLB, HH worked on methodology of the project. SR wrote the original draft and all other authors reviewed and edited the manuscript. AJH led the resources, supervision, funding acquisition aims of the project.

Corresponding author

Correspondence to Ashley J. Housten.

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Ruiz, S., Mintz, R., Sijecic, A. et al. Websites about, not for, adolescents? A systematic analysis of online fertility preservation information for adolescent and young adult cancer patients. J Cancer Surviv (2023). https://doi.org/10.1007/s11764-023-01386-1

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