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

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Journal of Cancer Survivorship Aims and scope Submit manuscript

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.

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Acknowledgements

We would like to thank the members of our stakeholder advisory group: the women who generously shared their insight and personal experiences making fertility preservation decisions; Donna Bell, MSN, RN, NP-C, Pediatric Oncology; Larissa Meyer, MD, MPH, Gynecologic Oncology; and Michelle Esser, JD, MBA, Young Survival Coalition and Joyce Reinecke, JD, Alliance for Fertility Preservation. We also appreciate the support of our colleagues at MD Anderson Cancer Center: the clinical and administrative staff of the Department of Gynecologic Oncology and Reproductive Medicine; Colleen Gallagher, PhD, MA, LSW, Integrated Ethics; and Gary Chisholm, MS, Department of Gynecologic Oncology and Reproductive Medicine. Finally, we thank the women who participated in this study and provided valuable feedback to improve the Pathways decision aid website.

Funding

This work was supported by a grant from The University of Texas MD Anderson Cancer Center Duncan Family Institute for Cancer Prevention and Risk Assessment. The statements presented in this work are solely the responsibility of the authors and do not necessarily represent the views of The University of Texas MD Anderson Cancer Center or the Duncan Family Institute for Cancer Prevention and Risk Assessment.

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Authors and Affiliations

  1. Department of Gynecologic Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center, 1155 Pressler Street, Unit 1362, Houston, TX, 77030, USA

    Terri L. Woodard & Deborah Holman

  2. Division of Reproductive Endocrinology and Infertility, Department of Obstetrics and Gynecology, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX, 77030, USA

    Terri L. Woodard

  3. Department of Health Services Research, The University of Texas MD Anderson Cancer Center, 1400 Pressler Street, Unit 1444, Houston, TX, 77030, USA

    Aubri S. Hoffman, Laura A. Covarrubias & Robert J. Volk

  4. Department of Behavioral Science, The University of Texas MD Anderson Cancer Center, Will2Love, LLC, 1333 Old Spanish Trail, Suite G, #134, Houston, TX, 77054, USA

    Leslie Schover

  5. Department of Medicine, Section of Gastroenterology and Hepatology, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX, 77030, USA

    Andrea Bradford

  6. Veracity by Design, LLC, 12400 Shadow Creek Parkway #606, Pearland, TX, 77584, USA

    Derek B. Hoffman

  7. Department of Analytics, The University of Texas at Arlington, Box 19027, 416 Yates Street, Nedderman Hall, Suite 307, Arlington, TX, 76019, USA

    Aakrati Mathur

  8. Patient Education, The University of Texas MD Anderson Cancer Center, 1155 Pressler Street, Unit 1288, Houston, TX, 77030, USA

    Jerah Thomas

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  1. Terri L. Woodard
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Contributions

All the authors contributed substantially to this paper, including the conceptualization (T.L.W., R.J.V.) and conduct of the study (T.L.W., L.A.C., L.S., D.H.); design and programming of the intervention (T.L.W, L.A.C., D.B.H., J.T. and A.S.H.) and interpretation (T.L.W., A.S.H., L.A.C., A.B., A.M., R.J.V.); and drafting (T.L.W., D.B.H., A.S.H.), editing (T.L.W., A.S.H., R.J.V.), and final review of the manuscript (all authors).

Corresponding author

Correspondence to Terri L. Woodard.

Ethics declarations

The institutional review board at the University of Texas MD Anderson Cancer Center reviewed and approved the study.

Conflicts of interest

The authors declare they have no conflicts of interest.

Appendix

Appendix

Table 5 International Patient Decision Aid Standards (IPDAS) collaboration quality checklist
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Woodard, T.L., Hoffman, A.S., Covarrubias, L.A. et al. The Pathways fertility preservation decision aid website for women with cancer: development and field testing. J Cancer Surviv 12, 101–114 (2018). https://doi.org/10.1007/s11764-017-0649-5

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