Evidence map›Paper›PMID 36824765›Full record

ArticleResearch square2023

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

Sienna Ruiz, Rachel Mintz, Amela Sijecic, Michelle Eggers, Aubri Hoffman, Terri Woodard, Kari Louise Bjonard, Holly Hoefgen, Taryn Sandheinrich, Kenan Omurtag and 1 more

Abstract readPreprint
In one paragraph

Article in Research square, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
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1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

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Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

11 authors.

Sienna RuizWashington University in St. Louis.
Rachel MintzWashington University in St. Louis.
Amela SijecicWashington University in St. Louis.
Michelle EggersWashington University in St. Louis.
Aubri HoffmanThe University of Texas at Austin.
Terri WoodardThe University of Texas MD Anderson Cancer Center.
Kari Louise BjonardIndiana University.
Holly HoefgenWashington University in St. Louis.
Taryn SandheinrichWashington University in St. Louis.
Kenan OmurtagWashington University in St. Louis.
Ashley J HoustenWashington University in St. Louis.

Funding

Washington University Implementation Science Center for Cancer Control (WU-ISCCC)P50CA244431 · NCI · WASHINGTON UNIVERSITY · PI JAMES, AIMEE S · 2019 to 2023
$8.0M
NCI NIH HHS P50 CA244431
6 · The paper itself

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.

Identifiers

PMID36824765
PMCPMC9949230

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.