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Patient and Family Tools to Aid in Education and Decision-Making About Oncofertility

  • Gwendolyn P. QuinnEmail author
  • Susan T. Vadaparampil
  • Ivana Sehovic
  • Marla L. Clayman
Chapter

Abstract

Adolescent and young adult patients diagnosed with cancer often respond by focusing more on immediate treatment needs, and not the potential consequences of late or long-term effects. However, addressing fertility preservation prior to the initiation of cancer treatment can help reduce the number of cancer survivors who experience infertility-related distress. Research has consistently shown that cancer patients and survivors desire to have their risks to fertility and preservation options disclosed even if they choose not to pursue fertility preservation options. Decision making in fertility preservation among cancer patients is complex and intricate, and tools to assist the healthcare professional or researcher in assessing the patient’s values and understanding of fertility are limited. Decisions about fertility preservation may be considered to have three components: risk appraisal, information integration, and long-term consideration. This chapter covers the criteria and framework for creating a patient decision aid and provides examples of currently available oncofertility-related educational materials and decision aids.

Keywords

Assisted Reproductive Technology Fertility Preservation Reproductive Endocrinologist Preservation Option Fertility Preservation Option 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

References

  1. 1.
    Peddie V, Porter M, Barbour R, et al. Factors affecting decision making about fertility preservation after cancer diagnosis: a qualitative study. BJOG. 2012;119:1049–57.PubMedCrossRefGoogle Scholar
  2. 2.
    Yee S, Abrol K, McDonald M, et al. Addressing oncofertility needs: views of female cancer patients in fertility preservation. J Psychosoc Oncol. 2012;30(3):331–46.PubMedCrossRefGoogle Scholar
  3. 3.
    Quinn GP, Vadaparampil ST, Jacobsen PB, et al. Frozen hope: fertility preservation for women with cancer. J Midwifery Womens Health. 2010;55(2):175–80.PubMedCrossRefGoogle Scholar
  4. 4.
    Knapp CA, Quinn GP, Murphy DM. Assessing the reproductive concerns of children and adolescents with cancer: challenges and potential solutions. J Adolesc Young Adult Oncol. 2011;1(1):31–5.PubMedCrossRefGoogle Scholar
  5. 5.
    Quinn GP, Murphy DM, Knapp CA, et al. Who decides? Decision making and fertility preservation in teens with cancer: a review of the literature. J Adolesc Health. 2011;49(4):337–46.PubMedCrossRefGoogle Scholar
  6. 6.
    IPDAS. Criteria for judging the quality of patient aids. 2005. Retrieved from http://www.ipdas.ohri.ca/IPDAS_checklist.pdf
  7. 7.
    O’Connor AM. Ottawa Decision Support Framework to Address Decisional Conflict. 2006. Retrieved from http://decisionaid.ohri.ca/docs/develop/ODSF.pdf
  8. 8.
    O’Connor AM, Stacey D, Jacobsen MJ. Ottawa decision support tutorial: improving practitioners’ decision support skills Ottawa Hospital Research Institute: patient decision aids. 2011. Retrieved from https://decisionaid.ohri.ca/ODST/pdfs/ODST.pdf
  9. 9.
    Doak LG, Doak CC, Meade CD. Strategies to improve cancer education materials. Oncol Nurs Forum. 1996;23(8):1305–12.PubMedGoogle Scholar
  10. 10.
    Vadaparampil ST, Quinn GP, Gjyshi A, et al. Development of a brochure for increasing awareness of inherited breast cancer in black women. Genet Test Mol Biomarkers. 2011;15(1–2):59–67.PubMedCrossRefGoogle Scholar
  11. 11.
    Fertile Hope. LiveStrong Foundation. 2013. Retrieved 31 Dec 2012. fertilehope.org
  12. 12.
    MyOncofertility.org. The Oncofertility Consortium. 2011. Retrieved on 31 Dec 2012. myoncofertility.org.
  13. 13.
    Web-based Fertility Preservation Decision-Aid: Fertility Preservation Options. Available at Oncofertilitydecision.org. Please contact author for more information: Mersereau JE: jennifer_mersereau@med.unc.edu
  14. 14.
    Murphy D, Sawczyn KK, Quinn GP. Using a patient-centered approach to develop a fertility preservation brochure for pediatric oncology patients: a pilot study. J Pediatr Adolesc Gynecol. 2012;25(2):114–21.PubMedCrossRefGoogle Scholar
  15. 15.
    Peate M, Meiser B, Cheah BC, et al. Making hard choices easier: a prospective, multicentre study to assess the efficacy of a fertility-related decision aid in young women with early-stage breast cancer. Br J Cancer. 2012;106:1053–61.PubMedCrossRefGoogle Scholar
  16. 16.
    Quinn GP, Murphy D, Wang H, et al. Having cancer does Not change wanting a baby: healthy adolescent Girls’ perceptions of cancer-related infertility. J Adolesc Health. 2012;52(2):164–9.PubMedCrossRefGoogle Scholar
  17. 17.
    Quinn G, Knapp C, Murphy D. Congruence of reproductive concerns among adolescents with cancer and their parents. Pediatrics. 2012;129:930–6.CrossRefGoogle Scholar
  18. 18.
    Clayman ML. Learning about cancer and fertility: A guide for parents of young girls. Unpublished work 2012; please contact author for more information: m-clayman@nrthwestern.edu.Google Scholar

Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • Gwendolyn P. Quinn
    • 1
    Email author
  • Susan T. Vadaparampil
    • 1
  • Ivana Sehovic
    • 1
  • Marla L. Clayman
    • 2
  1. 1.Department of Health Outcomes and BehaviorMoffitt Cancer CenterTampaUSA
  2. 2.Division of General Internal Medicine and Robert H. Lurie Comprehensive Cancer CenterNorthwestern UniversityChicagoUSA

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