Helping transgender youth engage in complex discussions about fertility preservation with their families and treatment teams is necessary to foster informed decision-making and to ultimately protect their reproductive autonomy. Transgender youth increasingly seek treatment with gender-affirming hormones (GAH; estrogen and testosterone) to align their bodies with their gender identity. GAH are medically indicated to treat gender dysphoria (i.e., distress due to a mismatch between birth-assigned sex and gender identity). But long-term GAH use may compromise fertility potential, thus limiting future reproductive options. Fertility preservation (FP) offers transgender youth seeking GAH the opportunity to have biological children in the future. Decisions about FP are complicated because: (1) clinical thresholds have not been established for how much GAH exposure will result in permanent negative effects on fertility, (2) pediatric FP options and assisted reproductive technologies (ART) are complex and rapidly evolving, (3) transgender youth must consider parenting intentions although youth may not be developmentally ready to engage in family planning decisions, and (4) impaired fertility affects future quality of life, rather than current functioning or survival. Recent studies show that less than 5% of transgender youth pursue FP despite routine counseling and referral to fertility clinics. Moreover, our preliminary data suggest that transgender youth lack specific knowledge of GAH effects on fertility and FP options. Thus, transgender youth are making decisions that have long-term implications on their reproductive health and autonomy based on incomplete knowledge and understanding of reproductive biology, GAH effects on fertility, and FP options. Taken together, this suggests that current protocols for fertility counseling may not be meeting patients? needs for informed decision-making. The goals of this study are to develop a patient- centered Aid For Fertility-Related Medical Decisions (AFFRMED) targeted for transgender youth, and pilot test the feasibility, acceptability, and efficacy of the AFFRMED on knowledge in a pre-/post-test design. Successful completion of this study will result in a web-based AFFRMED prototype that will: (1) foster patient-centered communication regarding complex and sensitive issues about future fertility, (2) aid transgender youth and their parents in making difficult decisions about medical treatment that may affect future fertility, and (3) facilitate informed decision-making about FP in the context of evolving ART.
The Institute of Medicine?s 2011 report ?The Health of Lesbian, Gay, Bisexual, and Transgender People,? called for NIH-supported research to develop evidence-based practices to improve quality of health care for transgender youth. The proposed study will develop and test the feasibility and efficacy of a patient-centered Aid For Fertility-Related Medical Decisions (AFFRMED) targeted for transgender youth facing decisions about fertility preservation due to gender-affirming medical care that may impair long-term fertility. The AFFRMED has the potential to positively impact care for transgender youth by: (1) improving knowledge of potential fertility risks associated gender-affirming treatment, options for fertility preservation, and alternate family- building options, (2) preparing youth and their caregivers for informed discussions with clinical providers regarding complex and sensitive issues related to fertility, (3) facilitating informed decision-making about fertility-altering treatments and fertility preservation, and (4) protecting transgender youths? reproductive autonomy.