Seuls 2 adolescents sur 73 d'une clinique du genre ont tenté de préserver leur fertilité malgré le conseil

Faible recours à la préservation de la fertilité chez les jeunes transgenres

Études de cohorte & registres Bloqueurs de puberté Éthique médicale & consentement

Authors: Leena Nahata, Amy C. Tishelman, Nicole M. Caltabellotta, Gwendolyn P. Quinn
Journal: Journal of Adolescent Health
Year: 2017
Source: https://doi.org/10.1016/j.jadohealth.2016.12.012

Summary

Researchers looked at the medical records of 73 teenagers with gender dysphoria (distress about their sex) who were being considered for puberty blockers or cross-sex hormones at an Ohio children's hospital. Almost all (72) had a recorded conversation about the risk that treatment could harm their future fertility, but only two tried to freeze eggs or sperm. Many said they would adopt (45%) or had never wanted children (21%). The authors call this use of fertility preservation low and say more research is needed on how teens' wishes about parenthood develop. The study is an early, often-cited sign that counselling alone rarely leads teens to save eggs or sperm. But it is small, relies on clinicians' notes, did not measure understanding or obstacles, and did not follow teens into adulthood to see if their views or regrets changed.

Key findings

L'étude a examiné les dossiers de 78 jeunes adressés pour un traitement hormonal dans une clinique américaine du genre pour enfants de janvier 2014 à août 2016 ; 73 adolescents ayant commencé la puberté ont été inclus.
72 des 73 adolescents (99 %) avaient une discussion consignée sur la fertilité avant de commencer les bloqueurs de puberté ou les hormones du sexe opposé.
Seuls 2 des 73 adolescents (3 %) ont tenté de congeler des ovocytes ou du sperme (préservation de la fertilité).
45 % disaient vouloir ou prévoir d'adopter, et 21 % disaient n'avoir jamais voulu d'enfants.
Les auteurs appellent à davantage de recherches sur l'évolution des souhaits d'avoir des enfants avec l'âge et sur l'effet de la détresse de genre sur ces choix.
Les résultats soulèvent des questions sur le consentement éclairé, car des adolescents ont refusé de conserver des ovocytes ou du sperme avant des traitements qui peuvent nuire définitivement à la fertilité, à un âge où leurs souhaits de parentalité peuvent changer.

Abstract

PURPOSE: Research demonstrates a negative psychosocial impact of infertility among otherwise healthy adults, and distress among adolescents facing the prospect of future infertility due to various medical conditions and treatments that impair reproductive health. Guidelines state that providers should counsel transgender youth about potential infertility and fertility preservation (FP) options prior to initiation of hormone therapy. The purpose of this study was to examine the rates of fertility counseling and utilization of FP among a cohort of adolescents with gender dysphoria seen at a large gender clinic.

METHODS: An Institutional Review Board-approved retrospective review of electronic medical records was conducted of all patients with ICD-9/10 codes for gender dysphoria referred to Pediatric Endocrinology for hormone therapy (puberty suppression and/or cross-sex hormones) from January 2014 to August 2016.

RESULTS: Seventy-eight patients met inclusion criteria. Five children were prepubertal, no hormone therapy was considered, and they were therefore excluded. Of the remaining 73 patients, 72 had documented fertility counseling prior to initiation of hormone therapy and 2 subjects attempted FP; 45% of subjects mentioned a desire or plan to adopt, and 21% said they had never wanted to have children.

CONCLUSIONS: Utilization rates of FP are low among transgender adolescents. More research is needed to understand parenthood goals among transgender youth at different ages and developmental stages and to explore the impact of gender dysphoria on decision-making about FP and parenthood. Discussions about infertility risk, FP, and other family building options should be prioritized in this vulnerable adolescent population.

Conclusion

Utilization rates of FP are low among transgender adolescents. More research is needed to understand parenthood goals among transgender youth at different ages and developmental stages and to explore the impact of gender dysphoria on decision-making about FP and parenthood. Discussions about infertility risk, FP, and other family building options should be prioritized in this vulnerable adolescent population.

Methodological limitations

Based on old records: Information came from what clinicians wrote in medical records, not from interviews or questionnaires. So what was actually said, and the teens' real reasons, cannot be checked.
Small group at one clinic: 73 teens at one US clinic over about 2.5 years makes the numbers imprecise and may not apply to other clinics, countries or later years.
Quality of counselling unknown: A recorded talk only shows a discussion was noted. Later studies (for example Johnson and colleagues, 2024) found big gaps between what clinicians recorded and what patients remembered being told.
Understanding not checked: The study did not test whether teens understood they could become permanently infertile, or could weigh their future wish for children.
Obstacles not measured: Cost, insurance, invasive procedures, the need to delay or pause treatment, and distress about the procedures were not measured. So low uptake cannot be blamed on lack of interest alone.
No follow-up: Teens were not followed into adulthood, so whether they later wanted biological children or regretted not saving eggs or sperm is unknown.
Counts only: The study did not analyse which factors (age, birth sex, stage of puberty, parents' involvement) were linked to choosing fertility preservation.

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Summary

Key findings

Abstract

Conclusion