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Genetic Counselors: Bridging the Oncofertility Information Gap

Abstract

The oncofertility information gap is caused by insufficient patient education on the effects of cancer treatment on fertility and the option of fertility preservation. Many cancer patients do not recall ever discussing the impact of cancer treatment on fertility with their oncologist; because of this, multidisciplinary care that includes fertility treatment is especially valuable for bridging the information gap. Genetic counselors—who are specifically trained to deliver options and facilitate decision making while also focusing on psychosocial issues—are an untapped resource for educating cancer patients about fertility impairment and fertility preservation options. Genetic counselors use a nondirective counseling approach to facilitate a shared decision-making process with patients. Additionally, genetic counselors provide emotional support and can assess when to make a mental health referral. Genetic counselors believe that fertility preservation discussions are important and a part of the genetic counselor role, yet the majority of cancer genetic counselors are not discussing fertility preservation or referring patients, often because of the timing of cancer treatment. A majority (79.7 %) of genetic counselors have reported that the number one barrier to discussing fertility preservation is seeing a patient after they have already undergone cancer treatment. If healthcare providers refer individuals who have a personal or family history suggestive of a hereditary or familial cancer prior to cancer treatment or prophylactic surgery, genetic counselors would have an opportunity to discuss fertility preservation with patients, thereby effectively bridging the oncofertility information gap.

Keywords

  • Genetic Counselor
  • National Comprehensive Cancer Network
  • National Comprehensive Cancer Network
  • Ovarian Cancer Patient
  • Preimplantation Genetic Diagnosis

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.

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References

  1. American Cancer Society. Cancer facts & figures 2013. Atlanta, GA: American Cancer Society; 2013.

    Google Scholar 

  2. Jeruss JS, Woodruff TK. Preservation of fertility in patients with cancer. N Engl J Med. 2009;360:902–11.

    PubMed  CrossRef  CAS  Google Scholar 

  3. Hershberger PE, Finnegan L, Pierce PF, Scoccia B. The decision-making process of young adult women with cancer who considered fertility cryopreservation. J Obstet Gynecol Neonatal Nurs. 2013;42:59–69.

    PubMed  CrossRef  Google Scholar 

  4. Yee S, Abrol K, McDonald M, Tonelli M, Liu KE. Addressing oncofertility needs: views of female cancer patients in fertility preservation. J Psychosoc Oncol. 2012;30:331–46.

    PubMed  CrossRef  Google Scholar 

  5. Letourneau JM, Ebbel EE, Katz PP, Katz A, Ai WZ, Chien AJ, Melisko ME, Cedars MI, Rosen MP. Pretreatment fertility counseling and fertility preservation improve quality of life in reproductive age women with cancer. Cancer. 2012;118:1710–7.

    PubMed  CrossRef  Google Scholar 

  6. Kirkman M, Stern C, Neil S, Winship I, Mann GB, Shanahan K, Missen D, Shepherd H, Fisher JR. Fertility management after breast cancer diagnosis: a qualitative investigation of women’s experiences of and recommendations for professional care. Health Care Women Int. 2013;34:50–67.

    PubMed  CrossRef  Google Scholar 

  7. Coccia PF, Altman J, Bhatia S, Borinstein SC, Flynn J, George S, Goldsby R, Hayashi R, Huang MS, Johnson RH, Beaupin LK, Link MP, Oeffinger KC, Orr KM, Pappo AS, Reed D, Spraker HL, Thomas DA, von Mehren M, Wechsler DS, Whelan KF, Zebrack BJ, Sundar H, Shead DA. Adolescent and young adult oncology. Clinical practice guidelines in oncology. J Natl Compr Canc Netw. 2012;10:1112–50.

    PubMed  Google Scholar 

  8. Peddie V, Porter M, Barbour R, Culligan D, MacDonald G, King D, Horn J, Bhattacharya S. Factors affecting decision making about fertility preservation after cancer diagnosis: a qualitative study. BJOG. 2012;119:1049–57.

    PubMed  CrossRef  CAS  Google Scholar 

  9. Tschudin S, Bitzer J. Psychological aspects of fertility preservation in men and women affected by cancer and other life-threatening diseases. Hum Reprod Update. 2009;15:587–97.

    PubMed  CrossRef  Google Scholar 

  10. Hayat Roshanai A, Lampic C, Ingvoldstad C, Askmalm MS, Bjorvatn C, Rosenquist R, Nordin K. What information do cancer genetic counselees prioritize? J Genet Couns. 2012;21:510–26.

    PubMed  CrossRef  Google Scholar 

  11. Campfield Bonadies D, Moyer A, Matloff ET. What I wish I’d known before surgery: BRCA carriers’ perspectives after bilateral salipingo-oophorectomy. Fam Cancer. 2011;10:79–85.

    PubMed  CrossRef  Google Scholar 

  12. Lee MC, Gray J, Han HS, Plosker S. Fertility and reproductive considerations in premenopausal patients with breast cancer. Cancer Control. 2010;17:162–72.

    PubMed  Google Scholar 

  13. Bennett RL, Hampel HL, Mandell JB, Marks JH. Genetic counselors: translating genomic science into clinical practice. J Clin Invest. 2003;112:1274–9.

    PubMed  CAS  Google Scholar 

  14. Uhlmann WR, Schuette JL, Yashar BM. A guide to genetic counseling. Hoboken, NJ: Wiley; 2009.

    Google Scholar 

  15. Weil J. Psychosocial genetic counseling. New York: Oxford University Press; 2000.

    Google Scholar 

  16. Veach PM, LeRoy BS, Bartels DM. Facilitating the genetic counseling process: a practice manual. New York: Springer; 2003.

    Google Scholar 

  17. Clayman ML, Galvin KM, Arntson P. Shared decision making: fertility and pediatric cancers. In: Woodruff TK, Snyder KA, editors. Oncofertility. New York: Springer Science + Business Media, LLC.; 2007.

    Google Scholar 

  18. Elwyn G, Gray J, Clarke A. Shared decision making and non-directiveness in genetic counselling. J Med Genet. 2000;37:135–8.

    PubMed  CrossRef  CAS  Google Scholar 

  19. Volk A, Aufox S, Fallen T, Beaumont J, Woodruff TK. Genetic Counselor attitudes, knowledge, and discussions of fertility preservation in the hereditary breast and ovarian cancer clinic. [unpublished manuscript]; 2012.

    Google Scholar 

  20. Berliner JL, Fay AM. Practice Issues Subcommittee of the National Society of Genetic Counselors’ Familial Cancer Risk Counseling Special Interest G. Risk assessment and genetic counseling for hereditary breast and ovarian cancer: recommendations of the National Society of Genetic Counselors. J Genet Couns. 2007;16:241–60.

    PubMed  CrossRef  Google Scholar 

  21. Wevers MR, Hahn DE, Verhoef S, Bolhaar MD, Ausems MG, Aaronson NK, Bleiker EM. Breast cancer genetic counseling after diagnosis but before treatment: a pilot study on treatment consequences and psychological impact. Patient Educ Couns. 2012;89:89–95.

    PubMed  CrossRef  Google Scholar 

  22. Miesfeldt S, Lamb A, Duarte C. Management of genetic syndromes predisposing to gynecologic cancers. Curr Treat Options Oncol. 2013;14:34–50.

    PubMed  CrossRef  Google Scholar 

  23. Domchek SM, Friebel TM, Neuhausen SL, Wagner T, Evans G, Isaacs C, Garber JE, Daly MB, Eeles R, Matloff E, Tomlinson GE, Van’t Veer L, Lynch HT, Olopade OI, Weber BL, Rebbeck TR. Mortality after bilateral salpingo-oophorectomy in BRCA1 and BRCA2 mutation carriers: a prospective cohort study. Lancet Oncol. 2006;7:223–9.

    PubMed  CrossRef  CAS  Google Scholar 

  24. Quinn G, Vadaparampil S, Wilson C, King L, Choi J, Miree C, Friedman S. Attitudes of high-risk women toward preimplantation genetic diagnosis. Fertil Steril. 2009;91:2361–8.

    PubMed  CrossRef  Google Scholar 

  25. Shulman LP, Dungan JS. Cancer genetics: risks and mechanisms of cancer in women with inherited susceptibility to epithelial ovarian cancer. In: Woodruff TK, Zoloth L, Campo-Engelstein L, Rodriguez S, editors. Oncofertility ethical, legal, social, and medical perspectives. New York: Springer Science + Business Media, LLC.; 2010.

    Google Scholar 

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Acknowledgements

This work was supported by the Oncofertility Consortium NIH 5UL1DE019587 and the Specialized Cooperative Centers Program in Reproduction and Infertility Research NIH U54HD076188.

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Correspondence to Allison Goetsch B.S., M.S. .

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Goetsch, A., Volk, A., Woodruff, T.K. (2014). Genetic Counselors: Bridging the Oncofertility Information Gap. In: Woodruff, T., Clayman, M., Waimey, K. (eds) Oncofertility Communication. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-8235-2_7

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  • DOI: https://doi.org/10.1007/978-1-4614-8235-2_7

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