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 S Hoffman, Terri Woodard, Kari L Bjornard, Holly Hoefgen, Taryn Sandheinrich, Kenan Omurtag, Ashley J Housten
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引用次数: 0
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.
期刊介绍：
Cancer survivorship is a worldwide concern. The aim of this multidisciplinary journal is to provide a global forum for new knowledge related to cancer survivorship. The journal publishes peer-reviewed papers relevant to improving the understanding, prevention, and management of the multiple areas related to cancer survivorship that can affect quality of care, access to care, longevity, and quality of life. It is a forum for research on humans (both laboratory and clinical), clinical studies, systematic and meta-analytic literature reviews, policy studies, and in rare situations case studies as long as they provide a new observation that should be followed up on to improve outcomes related to cancer survivors. Published articles represent a broad range of fields including oncology, primary care, physical medicine and rehabilitation, many other medical and nursing specialties, nursing, health services research, physical and occupational therapy, public health, behavioral medicine, psychology, social work, evidence-based policy, health economics, biobehavioral mechanisms, and qualitative analyses. The journal focuses exclusively on adult cancer survivors, young adult cancer survivors, and childhood cancer survivors who are young adults. Submissions must target those diagnosed with and treated for cancer.
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