Fertility Decision-Making in Youth and Young Adults

青少年的生育决策

• 批准号: 9790975
• 负责人: Diane Chen
• 金额: $ 19.24万
• 依托单位: LURIE CHILDREN'S HOSPITAL OF CHICAGO
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-09-21 至 2021-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9790975
• 关键词: Address; Adolescent; Adult; Affect; Age; Assisted Reproductive Technology; Biological; Birth; Caregivers; Caring; Cell Maturation; Child; Child Rearing; Childhood; Clinic; Clinical; Communication; Community Surveys; Complex; Continuity of Patient Care; Counseling; Cryopreservation; Data; Decision Aid; Decision Making; Development; Distress; Education; Estrogens; Evidence based practice; Family; Family Planning; Fertility; Fertility Agents; Focus Groups; Fostering; Future; Gender; Gender Identity; Germ Cells; Goals; Gonadotropin-Releasing Hormone Analog; Health; Healthcare; Hormones; Impairment; Institute of Medicine (U.S.); Intervention; Knowledge; Language; Lesbian Gay Bisexual Transgender; Measures; Medical; Online Systems; Outcome Measure; Parents; Patients; Pre-Post Tests; Procedures; Protocols documentation; Provider; Puberty; Quality of Care; Quality of life; Reporting; Reproductive Biology; Reproductive Health; Research; Research Support; Risk; Sampling; Sex Characteristics; Technology; Testing; Testosterone; Time; United States; United States National Institutes of Health; Youth; adopted child; arm; base; cost; design; fertility preservation; gender dysphoria; health care quality; improved; instrument; interest; meetings; multidisciplinary; patient oriented; pilot trial; prevent; prototype; reproductive; sex; standard of care; transgender; usability; user centered design; young adult

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.

帮助跨性别者青年与他们的家人和 治疗小组是必要的，以促进知情的决策，并最终保护他们的生殖 自主。跨性别青年越来越多地寻求性别肯定激素(GAH；雌激素)治疗 和睾丸激素)，以使他们的身体与他们的性别认同相一致。Gah在医学上被用来治疗性别 焦虑症(即，由于出生性别和性别认同不匹配而产生的痛苦)。但从长远来看 GAH的使用可能会影响生育潜力，从而限制未来的生育选择。保持生育能力(FP) 为寻求在未来生孩子的跨性别青年提供机会。关于以下方面的决定 FP是复杂的，因为：(1)还没有建立GAH暴露的临床阈值 会对生育造成永久性的负面影响，(2)儿科计划生育选择和辅助生殖 技术(ART)是复杂和快速发展的，(3)跨性别青年必须考虑育儿意图 尽管年轻人在发育方面可能还没有准备好参与计划生育决策，以及(4)身体受损 生育率影响的是未来的生活质量，而不是目前的功能或生存。最近的研究表明， 尽管常规咨询和转诊到生育诊所，但仍有超过5%的变性人青年追求计划生育。此外， 我们的初步数据表明，变性人青年缺乏GAH对生育力和FP影响的具体知识 选择。因此，跨性别青年正在做出对他们的生殖能力具有长期影响的决定 健康和自主性基于对生殖生物学、GAH效应的不完全了解和理解 关于生育率和计划生育的选择。综上所述，这表明目前的生育咨询方案可能不会 满足患者对知情决策的需求。这项研究的目标是培养一名患者- 针对变性人青年的生育相关医疗决策中心援助(AFFRMED)和试点试验 AFFRMED在前后测试设计中对知识的可行性、可接受性和有效性。成功 这项研究的完成将产生一个基于网络的AFFRMED原型，它将：(1)促进以患者为中心 关于未来生育率的复杂和敏感问题的沟通，(2)援助变性人青年和 他们的父母在可能影响未来生育的医疗问题上做出艰难的决定，以及(3) 在不断发展的抗逆转录病毒疗法的背景下，促进关于计划生育的明智决策。