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“Looking at future cancer survivors, give them a roadmap”: addressing fertility and family-building topics in post-treatment cancer survivorship care

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Abstract

Purpose

Fertility is an important issue among adolescent and young adult female (AYA-F) cancer survivors. This study examined AYA-F survivors’ unmet needs and recommendations for care to address fertility/family-building in post-treatment survivorship.

Methods

Semi-structured interviews (45–60 min) explored themes related to fertility and family-building after cancer. Coding categories were derived based on grounded theory methods. Themes were identified through an iterative process of coding and review.

Results

Participants (N = 25) averaged 29 years old (SD = 6.2; range, 15–39) were primarily White and well educated, and averaged 5.81 years post-treatment (SD = 5.43); 32% had undergone fertility preservation (pre- or post-cancer). Six recommendations for improving care were identified: addressing patient-provider communication, need to provide informational, emotional, and peer support, financial information, and decision-making support. AYA-Fs believed the best way to learn about resources was through online platforms or doctor-initiated discussions. Telehealth options and digital resources were generally considered acceptable. Face-to-face interactions were preferred for in-depth information, when AYA-Fs anticipated having immediate questions or distressing emotions, and with concerns about Internet security. Thus, a combined approach was preferred such that information (via web-based communication) should be provided first, with follow-up in-person visits and referrals when needed.

Conclusion

Informational and support services are needed to better educate patients about gonadotoxic effects and options to have children after cancer treatment is completed. Future work should evaluate how to best support oncology providers in meeting the needs of survivors concerned about fertility and family-building including referral to clinical specialties and supportive resources.

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Acknowledgments

We would like to acknowledge the support provided from our patient organization partners with recruitment efforts, including Stupid Cancer, Lacuna Loft, The Samfund, Alliance for Fertility Preservation, and Army of Women.

Funding

This research was supported by a grant from the National Cancer Institute (R03CA212924, PI: Catherine Benedict).

Author information

Authors and Affiliations

Authors

Contributions

Conceptualization: Catherine Benedict, Michael Diefenbach, and Jennifer Ford. Methodology: Catherine Benedict, Michael Diefenbach, and Jennifer Ford. Formal analysis and investigation: Catherine Benedict, Jen-Ling Nieh, Alexandria Hahn, and Alyssa McCready. Writing—original draft preparation: Catherine Benedict. Writing—review and editing: Jen-Ling Nieh, Alexandria Hahn, Alyssa McCready, Michael Diefenbach, and Jennifer Ford. Funding acquisition: Catherine Benedict. Resources: N/A. Supervision: N/A.

Corresponding author

Correspondence to Catherine Benedict.

Ethics declarations

Conflict of interest

Catherine Benedict is a member of the Stupid Cancer Board of Directors and a member of the Advisory Council for the Alliance for Fertility Preservation. These organizations assisted in recruitment efforts. There are no financial relationships to disclose. All other authors declare that they have no conflict of interest.

Research involving human subjects

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee (Northwell Health Institutional Review Board; Protocol #16-876) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Welfare of animals

This article does not contain any studies with animals performed by any of the authors.

Code availability

Not applicable.

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Alexandria Hahn completed this work while at Northwell Health.

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Benedict, C., Nieh, JL., Hahn, A.L. et al. “Looking at future cancer survivors, give them a roadmap”: addressing fertility and family-building topics in post-treatment cancer survivorship care. Support Care Cancer 29, 2203–2213 (2021). https://doi.org/10.1007/s00520-020-05731-3

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