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Published in:

01-02-2018

The Pathways fertility preservation decision aid website for women with cancer: development and field testing

Authors: Terri L. Woodard, Aubri S. Hoffman, Laura A. Covarrubias, Deborah Holman, Leslie Schover, Andrea Bradford, Derek B. Hoffman, Aakrati Mathur, Jerah Thomas, Robert J. Volk

Published in: Journal of Cancer Survivorship | Issue 1/2018

Abstract

Purpose

To improve survivors’ awareness and knowledge of fertility preservation counseling and treatment options, this study engaged survivors and providers to design, develop, and field-test Pathways: a fertility preservation patient decision aid website for young women with cancer©.

Methods

Using an adapted user-centered design process, our stakeholder advisory group and research team designed and optimized the Pathways patient decision aid website through four iterative cycles of review and revision with clinicians (n = 21) and survivors (n = 14). Field-testing (n = 20 survivors) assessed post-decision aid scores on the Fertility Preservation Knowledge Scale, feasibility of assessing women’s decision-making values while using the website, and website usability/acceptability ratings.

Results

Iterative stakeholder engagement optimized the Pathways decision aid website to meet survivors’ and providers’ needs, including providing patient-friendly information and novel features such as interactive value clarification exercises, testimonials that model shared decision making, financial/referral resources, and a printable personal summary. Survivors scored an average of 8.2 out of 13 (SD 1.6) on the Fertility Preservation Knowledge Scale. They rated genetic screening and having a biological child as strong factors in their decision-making, and 71% indicated a preference for egg freezing. Most women (> 85%) rated Pathways favorably, and all women (100%) said they would recommend it to other women.

Conclusions

The Pathways decision aid is a usable and acceptable tool to help women learn about fertility preservation.

Implications for Cancer Survivors

The Pathways decision aid may help women make well-informed values-based decisions and prevent future infertility-related distress.

Available only for authorised users

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Title: The Pathways fertility preservation decision aid website for women with cancer: development and field testing
Authors: Terri L. Woodard
Aubri S. Hoffman
Laura A. Covarrubias
Deborah Holman
Leslie Schover
Andrea Bradford
Derek B. Hoffman
Aakrati Mathur
Jerah Thomas
Robert J. Volk
Publication date: 01-02-2018
Publisher: Springer US
Published in: Journal of Cancer Survivorship / Issue 1/2018
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI: https://doi.org/10.1007/s11764-017-0649-5

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Abstract

Purpose

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Implications for Cancer Survivors

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