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Formative development of a fertility decision aid for transgender adolescents and young adults: a multidisciplinary Delphi consensus study

  • Assisted Reproduction Technologies
  • Published:
Journal of Assisted Reproduction and Genetics Aims and scope Submit manuscript

Abstract

Purpose

No educational and decision support tools exist to aid transgender and non-binary (TNB) adolescents and young adults (AYA) in making decisions about fertility preservation in the context of initiating gender-affirming medical care that can impair fertility. This study identified critical content areas and learning objectives to include in a decision aid about fertility preservation targeted for TNB AYA.

Methods

Delphi methodology was leveraged to engage 80 multidisciplinary experts in reproductive medicine and pediatric transgender health care in a two round consensus building procedure. Proposed content areas rated as “probably keep” or “definitely keep” by 75% of experts were retained. Proposed learning objectives reaching 75% agreement on ratings of importance and priority were also identified.

Results

The Delphi procedure identified five priority content areas (Basic Reproduction; Gender-Affirming Medical Interventions: Impacts on Fertility; Established Fertility Preservation Options; Benefits and Risks of Established Fertility Preservation Procedures; Alternative Pathways to Parenting) and 25 learning objectives to prioritize in a fertility-related decision aid for TNB AYA.

Conclusion

A multidisciplinary panel of experts achieved agreement around content areas and learning objectives to incorporate into a decision aid about fertility preservation for TNB AYA.

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References

  1. Nahata L, Tishelman AC, Caltabellotta NM, Quinn GP. Low fertility preservation utilization among transgender youth. J Adolesc Health. 2017;61(1):40–4.

    Article  Google Scholar 

  2. Lai TC, McDougall R, Feldman D, Elder CV, Pang KC. Fertility counseling for transgender adolescents: a review. J Adolesc Health. 2020;66(6):658–65.

    Article  Google Scholar 

  3. Coleman E, Bockting W, Botzer M, Cohen-Kettenis P, DeCuypere G, Feldman J, et al. Standards of Care for the Health of Transsexual, Transgender, and Gender-Nonconforming People, Version 7. International Journal of Transgenderism. 2012;13(4):165–232.

    Article  Google Scholar 

  4. Hembree WC, Cohen-Kettenis PT, Gooren L, Hannema SE, Meyer WJ, Murad MH, et al. Endocrine treatment of gender-dysphoric/gender-incongruent persons: an Endocrine Society Clinical Practice Guideline. J Clin Endocrinol Metab. 2017;102(11):3869–903.

    Article  Google Scholar 

  5. Chen D, Simons L, Johnson EK, Lockart BA, Finlayson C. Fertility preservation for transgender adolescents. J Adolesc Health. 2017;61(1):120–3.

    Article  Google Scholar 

  6. Wakefield BW, Boguszewski KE, Cheney D, Taylor JF. Patterns of fertility discussions and referrals for youth at an interdisciplinary gender clinic. LGBT Health. 2019;6(8):417–21.

    Article  Google Scholar 

  7. Chen D, Matson M, Macapagal K, Johnson EK, Rosoklija I, Finlayson C, et al. Attitudes toward fertility and reproductive health among transgender and gender-nonconforming adolescents. J Adolesc Health. 2018;63(1):62–8.

    Article  Google Scholar 

  8. Persky RW, Gruschow SM, Sinaii N, Carlson C, Ginsberg JP, Dowshen NL. Attitudes toward fertility preservation among transgender youth and their parents. J Adolesc Health. 2020.

  9. Strang JF, Jarin J, Call D, Clark B, Wallace GL, Anthony LG, et al. Transgender youth fertility attitudes questionnaire: measure development in nonautistic and autistic transgender youth and their parents. J Adolesc Health. 2018;62(2):128–35.

    Article  Google Scholar 

  10. Chen D, Kyweluk MA, Sajwani A, Gordon EJ, Johnson EK, Finlayson CA, et al. Factors affecting fertility decision-making among transgender adolescents and young adults. LGBT Health. 2019;6(3):107–15.

    Article  Google Scholar 

  11. Chen D, Kolbuck VD, Sutter ME, Tishelman AC, Quinn GP, Nahata L. Knowledge, practice behaviors, and perceived barriers to fertility care among providers of transgender healthcare. J Adolesc Health. 2019;64(2):226–34.

    Article  Google Scholar 

  12. Moravek MB. Fertility preservation options for transgender and gender-nonconforming individuals. Curr Opin Obstet Gynecol. 2019;31(3):170–6.

    Article  Google Scholar 

  13. Matoso A, Khandakar B, Yuan S, Wu T, Wang LJ, Lombardo KA, et al. Spectrum of findings in orchiectomy specimens of persons undergoing gender confirmation surgery. Hum Pathol. 2018;76:91–9.

    Article  Google Scholar 

  14. Leavy M, Trottmann M, Liedl B, Reese S, Stief C, Freitag B, et al. Effects of elevated beta-estradiol levels on the functional morphology of the testis—new insights. Sci Rep. 2017;7:39931.

    Article  CAS  Google Scholar 

  15. Schulze C. Response of the human testis to long-term estrogen treatment: morphology of Sertoli cells, Leydig cells and spermatogonial stem cells. Cell Tissue Res. 1988;251(1):31–43.

    Article  CAS  Google Scholar 

  16. Adeleye AJ, Reid G, Kao CN, Mok-Lin E, Smith JF. Semen parameters among transgender women with a history of hormonal treatment. Urology. 2019;124:136–41.

    Article  Google Scholar 

  17. Lubbert H, Leo-Rossberg I, Hammerstein J. Effects of ethinyl estradiol on semen quality and various hormonal parameters in a eugonadal male. Fertil Steril. 1992;58(3):603–8.

    Article  CAS  Google Scholar 

  18. Pache TD, et al. Ovarian morphology in long-term androgen-treated female to male transsexuals. A human model for the study of polycystic ovarian syndrome? Histopathology. 1991;19(5):445–52.

    Article  CAS  Google Scholar 

  19. Spinder T, et al. The effects of long term testosterone administration on pulsatile luteinizing hormone secretion and on ovarian histology in eugonadal female to male transsexual subjects. J Clin Endocrinol Metab. 1989;69(1):151–7.

    Article  CAS  Google Scholar 

  20. Futterweit W, Deligdisch L. Histopathological effects of exogenously administered testosterone in 19 female to male transsexuals. J Clin Endocrinol Metab. 1986;62(1):16–21.

    Article  CAS  Google Scholar 

  21. Grynberg M, Fanchin R, Dubost G, Colau JC, Brémont-Weil C, Frydman R, et al. Histology of genital tract and breast tissue after long-term testosterone administration in a female-to-male transsexual population. Reprod BioMed Online. 2010;20(4):553–8.

    Article  CAS  Google Scholar 

  22. Ikeda K, Baba T, Noguchi H, Nagasawa K, Endo T, Kiya T, et al. Excessive androgen exposure in female-to-male transsexual persons of reproductive age induces hyperplasia of the ovarian cortex and stroma but not polycystic ovary morphology. Hum Reprod. 2013;28(2):453–61.

    Article  CAS  Google Scholar 

  23. De Roo C, et al. Ovarian tissue cryopreservation in female-to-male transgender people: insights into ovarian histology and physiology after prolonged androgen treatment. Reprod BioMed Online. 2017.

  24. Van Den Broecke R, et al. The female-to-male transsexual patient: a source of human ovarian cortical tissue for experimental use. Hum Reprod. 2001;16(1):145–7.

    Article  Google Scholar 

  25. Tishelman AC, Sutter ME, Chen D, Sampson A, Nahata L, Kolbuck VD, et al. Health care provider perceptions of fertility preservation barriers and challenges with transgender patients and families: qualitative responses to an international survey. J Assist Reprod Genet. 2019;36(3):579–88.

    Article  Google Scholar 

  26. Allingham C, Gillam L, McCarthy M, Zacharin M, Jayasuriya S, Heloury Y, et al. Fertility preservation in children and adolescents with cancer: pilot of a decision aid for parents of children and adolescents with cancer. JMIR Pediatr Parent. 2018;1(2):e10463.

    Article  Google Scholar 

  27. Speller B, Metcalfe K, Kennedy ED, Facey M, Greenblatt E, Scheer AS, et al. The “Begin Exploring Fertility Options, Risks and Expectations” (BEFORE) decision aid: development and alpha testing of a fertility tool for premenopausal breast cancer patients. BMC Med Inform Decis Mak. 2019;19(1):203.

    Article  Google Scholar 

  28. Woodard TL, Hoffman AS, Covarrubias LA, Holman D, Schover L, Bradford A, et al. The pathways fertility preservation decision aid website for women with cancer: development and field testing. J Cancer Surviv. 2018;12(1):101–14.

    Article  Google Scholar 

  29. Quain KM, et al. Timing and delivery of fertility preservation information to transgender adolescents, young adults, and their parents. J Adolesc Health.

  30. Hsu C, Sandford BA. The Delphi technique: making sense of consensus. Pract Assess Res Eval. 2007;12(10):1–8.

    Google Scholar 

  31. Rowe G, Wright G. The Delphi technique as a forecasting tool: issues and analysis. Int J Forecast. 1999;15(4):353–75.

    Article  Google Scholar 

  32. Hsieh S, Leininger J. Resource list: clinical care programs for gender-nonconforming children and adolescents. Pediatr Ann. 2014;43(6):238–44.

    Article  Google Scholar 

  33. Baram S, Myers SA, Yee S, Librach CL. Fertility preservation for transgender adolescents and young adults: a systematic review. Hum Reprod Update. 2019;25(6):694–716.

    Article  CAS  Google Scholar 

  34. Kyweluk MA, Sajwani A, Chen D. Freezing for the future: transgender youth respond to medical fertility preservation. International Journal of Transgenderism. 2018;19(4):401–16.

    Article  Google Scholar 

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Acknowledgments

We would like to recognize the contributions of the experts who served on the Delphi panel, including the following experts that consented to be acknowledged by name: Amanda Adeleye, MD, Deanna Adkins, MD, N. Jean Amoura, MD, Douglas Austin, MD, Sara Barton, MD, Uri Belkind, MD, Lia Bernardi, MD, Nicole Budrys, MD, Reeti Chawla, MD, Phillip Cheng, MD, Mandy Coles, MD, Lee Ann Conrad, DO, Nadia Dowshen, MD, Laura Edwards-Leeper, PhD, Diane Ehrensaft, PhD, Eve Feinberg, MD, Michelle Forcier, MD, Andrea Giedinghagen, MD, Elizabeth Ginsburg, MD, Veronica Gomez-Lobo, MD, Jacqueline Gutmann, MD, Heather Hoff, MD, Nina Jain, MD, Jason Jarin, MD, Leah Kaye, MD, Zaraq Khan, MD, Laura Kuper, PhD, Angela Lawson, PhD, Scott Leibowitz, MD, Christopher Lewis, MD, Maja Marinkovic, MD, Edward Marut, MD, Molly Moravek, MD, Sara Mucowski, MD, Leena Nahata, MD, Natalie Nokoff, MD, Christy Olezeski, PhD, Kyle Orwig, PhD, Samuel Pang, MD, Mary Ellen Pavone, MD, Elyse Pine, MD, Gwendolyn Quinn, PhD, John Randolph, MD, Stephen Rosenthal, MD, Daniel Shumer, MD, Lisa Simons, MD, Julia Taylor, MD, Amy Tishelman, PhD, Anthony Vavasis, MD, Carolyn Wolf-Gould, MD, and Teresa Woodruff, PhD.

Funding

This work was supported by R21 HD097459 from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). Study sponsors had no role in the (a) study design; (b) collection, analysis, and interpretation of data; (c) writing of the report; or (d) the decision to submit the manuscript for publication. The Research Electronic Data Capture database (REDCap) was funded by the National Institutes of Health’s National Center for Advancing Translational Sciences, Grant Number UL1TR001422, awarded to the Northwestern University Clinical and Translational Sciences Institute.

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Authors and Affiliations

  1. Potocsnak Family Division of Adolescent and Young Adult Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, 225 East Chicago Avenue, Box 161B, Chicago, IL, 60611-2605, USA

    Victoria D. Kolbuck, Afiya Sajwani & Diane Chen

  2. Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA

    Moira A. Kyweluk

  3. Division of Endocrinology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA

    Courtney Finlayson

  4. Center for Health Services and Outcomes Research and Center for Bioethics and Medical Humanities, Institute for Public Health and Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Courtney Finlayson & Diane Chen

  5. Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Elisa J. Gordon

  6. Department of Surgery, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Elisa J. Gordon

  7. Pritzker Department of Psychiatry and Behavioral Health, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA

    Diane Chen

  8. Department of Psychiatry & Behavioral Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Diane Chen

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  1. Victoria D. Kolbuck
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  2. Afiya Sajwani
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  3. Moira A. Kyweluk
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  4. Courtney Finlayson
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  5. Elisa J. Gordon
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  6. Diane Chen
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Correspondence to Diane Chen.

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Kolbuck, V.D., Sajwani, A., Kyweluk, M.A. et al. Formative development of a fertility decision aid for transgender adolescents and young adults: a multidisciplinary Delphi consensus study. J Assist Reprod Genet 37, 2805–2816 (2020). https://doi.org/10.1007/s10815-020-01947-8

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  • DOI: https://doi.org/10.1007/s10815-020-01947-8

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