Journal of Assisted Reproduction and Genetics, 2020
Purpose No educational and decision support tools exist to aid transgender and non-binary (TNB) a... more 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.
Purpose: This study aimed to identify factors affecting transgender adolescents' and young adults... more Purpose: This study aimed to identify factors affecting transgender adolescents' and young adults' (AYA) decisions to pursue fertility preservation (FP). Methods: Participants completed a semistructured interview between December 2016 and June 2017 to inform improvements in fertility counseling and the development of a fertility decision aid targeted to transgender youth. Interviews included open-ended questions within the following domains: (1) gender-affirming medical care received, (2) knowledge of gender-affirming hormone effects on fertility and FP options, (3) FP decision-making, and (4) how, when, and what information AYA prefer to receive regarding FP. The interviews were analyzed thematically. Results: Eighteen transgender AYA (ages 15-24) participated (60% participation rate). The majority was White (61%) and assigned female at birth (67%). Half received specialized FP counseling (50%). Few of the transgender AYA pursued FP (33%). Five key themes reflecting factors affecting transgender AYA's FP decision-making were identified: (1) future parenthood desires, (2) individual experiences of gender dysphoria, (3) family values around biological parenthood, (4) financial considerations, and (5) fertility information provision. Conclusions: Transgender AYA consider numerous factors in deciding whether to pursue FP. Although individual desires for and family values around biological parenthood influenced whether AYA pursued specialized FP counseling, individual experiences of gender dysphoria and costs of FP were barriers. AYA also identified shortcomings in fertility counseling with providers, highlighting the need to establish standardized counseling protocols and develop patient decision aids.
Transgender and gender diverse (TGD) youth and their families are seeking medical and mental heal... more Transgender and gender diverse (TGD) youth and their families are seeking medical and mental health care at increasing rates. As the number of multidisciplinary pediatric gender programs expands, we consider the history and evidence base for gender affirmative care and highlight existing models of care that can flexibly accommodate the diverse needs of TGD youth and their families. Comprehensive multidisciplinary care includes both medical and mental health providers who work collaboratively with TGD youth and their caregivers to assess gender-related support needs and facilitate access to developmentally appropriate medical and mental health interventions. In addition to direct health-care services, multidisciplinary care for TGD youth and their families extends into community training, education, community outreach, nonmedical programming, and advocacy for TGD youth.
Background: Reproductive health counseling is essential for adolescents and young adults (AYAs). ... more Background: Reproductive health counseling is essential for adolescents and young adults (AYAs). Transgender and gender diverse (TGD) AYAs would benefit from tailored counseling given concerns about iatrogenic infertility and sexual dysfunction, and high rates of interpersonal violence, unplanned pregnancies and sexually transmitted infections, yet there are multiple obstacles to providing this care at the patient/family and clinician levels. Objectives: This narrative review summarizes the literature on reproductive health considerations for TGD AYAs, current practices, and clinician barriers and facilitators to providing culturally sensitive reproductive care for TGD AYAs. Specific areas of focus include reproductive health goals, risks, and access barriers; clinician knowledge practices and challenges; and strategies for improving counseling practices.
This retrospective chart review aims to address gaps in the literature regarding the efficacy and... more This retrospective chart review aims to address gaps in the literature regarding the efficacy and interaction of gonadotropin-releasing hormone agonists (GnRHa) and gender-affirming hormone therapies in medical transition regimens in transgender adolescents. We abstracted and reviewed data from 83 patients at our pediatric gender clinic, and found that patients who initiated treatment with GnRHa before gender-affirming hormones (estrogen, testosterone) required lower doses of those hormones than those who did not use GnRHa. The results of this preliminary research provide a foundation for future long-term prospective studies aimed to better understand these relationships.
Journal of Assisted Reproduction and Genetics, 2021
Purpose Today, male and female adult and pediatric cancer patients, individuals transitioning bet... more Purpose Today, male and female adult and pediatric cancer patients, individuals transitioning between gender identities, and other individuals facing health extending but fertility limiting treatments can look forward to a fertile future. This is, in part, due to the work of members associated with the Oncofertility Consortium. Methods The Oncofertility Consortium is an international, interdisciplinary initiative originally designed to explore the urgent unmet need associated with the reproductive future of cancer survivors. As the strategies for fertility management were invented, developed or applied, the individuals for who the program offered hope, similarly expanded. As a community of practice, Consortium participants share information in an open and rapid manner to addresses the complex health care and quality-oflife issues of cancer, transgender and other patients. To ensure that the organization remains contemporary to the needs of the community, the field designed a fully inclusive mechanism for strategic planning and here present the findings of this process. Results This interprofessional network of medical specialists, scientists, and scholars in the law, medical ethics, religious studies and other disciplines associated with human interventions, explore the relationships between health, disease, survivorship, treatment, gender and reproductive longevity.
Pubertal suppression is standard of care for early pubertal transgender youth to prevent the deve... more Pubertal suppression is standard of care for early pubertal transgender youth to prevent the development of undesired and distressing secondary sex characteristics incongruent with gender identity. Preliminary evidence suggests pubertal suppression improves mental health functioning. Given the widespread changes in brain and cognition that occur during puberty, a critical question is whether this treatment impacts neurodevelopment. Methods: A Delphi consensus procedure engaged 24 international experts in neurodevelopment, gender development, puberty/adolescence, neuroendocrinology, and statistics/psychometrics to identify priority research methodologies to address the empirical question: is pubertal suppression treatment associated with real-world neurocognitive sequelae? Recommended study approaches reaching 80% consensus were included in the consensus parameter. Results: The Delphi procedure identified 160 initial expert recommendations, 44 of which ultimately achieved consensus. Consensus study design elements include the following: a minimum of three measurement time points, pubertal staging at baseline, statistical modeling of sex in analyses, use of analytic approaches that account for heterogeneity, and use of multiple comparison groups to minimize the limitations of any one group. Consensus study comparison groups include untreated transgender youth matched on pubertal stage, cisgender (i.e., gender congruent) youth matched on pubertal stage, and an independent sample from a large-scale youth development database. The consensus domains for assessment includes: mental health, executive function/cognitive control, and social awareness/functioning. Conclusion: An international interdisciplinary team of experts achieved consensus around primary methods and domains for assessing neurodevelopmental effects (i.e., benefits and/or difficulties) of pubertal suppression treatment in transgender youth.
Gender-affirming hormones may compromise gonadal function leading to subfertility or infertility.... more Gender-affirming hormones may compromise gonadal function leading to subfertility or infertility. Fertility preservation (FP; i.e., egg and sperm ''freezing'') before starting hormones offers future options to transgender individuals. In the United States, FP is extremely expensive and rarely covered by medical insurance; state-specific laws govern required benefits. Recent changes in insurance mandates in Connecticut, Delaware, Illinois, Maryland, New Hampshire, New York, and Rhode Island have expanded FP coverage, but implications of these changes for transgender individuals are unclear. State-by-state advocacy to expand insurance coverage for FP in individuals whose medically necessary treatments compromise fertility should consider the needs of transgender individuals desiring biological parenthood.
International Journal of Pediatric Endocrinology, 2019
Objectives: Consumers rely on online health information, particularly for unusual conditions. Dis... more Objectives: Consumers rely on online health information, particularly for unusual conditions. Disorders of Sex Development (DSD) are complex with some aspects of care controversial. Accurate web-based DSD information is essential for decision-making, but the quality has not been rigorously evaluated. The purpose of the present study was to assess the quality of online health information related to DSD presented by 12 pediatric institutions comprising the NIH-sponsored DSD-Translational Research Network (DSD-TRN). Methods: DSD-TRN sites identified team webpages, then we identified linked webpages. We also used each institution search engine to search common DSD terms. We assessed webpages using validated tools: the Simple Measure of Gobbledygook (SMOG) determined reading level, the Patient Education Materials Assessment Tool (PEMAT) evaluated content for understandability and actionability, and the DISCERN tool assessed treatment decision-making information (for hormone replacement and surgery). We developed a "Completeness" measure which assessed the presence of information on 25 DSD topics. Results: The SMOG reading level of webpages was at or above high-school grade level. Mean (SD) PEMAT understandability score for Team Pages and Team Links was 68% (6%); on average these pages met less than 70% of the understandability criteria. Mean (SD) PEMAT actionability score was 23% (20%); few patient actions were identified. The DISCERN tool determined that the quality of information related to hormone treatment and to surgery was poor. Sites' webpages covered 12-56% of the items on our Completeness measure. Conclusions: Quality of DSD online content was poor, and would be improved by using a variety of strategies, such as simplifying word choice, using visual aids, highlighting actions patients can take and acknowledging areas of uncertainty. For complex conditions such as DSD, high-quality web-based information is essential to empower patients (and caregiver proxies), particularly when aspects of care are controversial.
BACKGROUND Transgender children and adolescents, those who experience incongruence between assign... more BACKGROUND Transgender children and adolescents, those who experience incongruence between assigned sex at birth and internal gender identity, are a poorly understood and understudied population in the United States. Since 2008, medical care for transgender youth has generally followed guidelines developed by professional consensus given the paucity of empirical research, particularly in a U.S. setting. OBJECTIVE The objective of this research is to provide evidence-based data to inform clinical care for transgender youth. The study aims to: 1) evaluate the impact of gonadotropin-releasing hormone (GnRH) agonists administered for puberty suppression on mental health, psychological well-being, and metabolic and physiologic parameters including bone health in a cohort of children and adolescents (Tanner stages 2-4) with gender dysphoria, comparing baseline and follow-up assessments; and 2) evaluate the impact of gender-affirming hormones (e.g. estradiol, testosterone, etc.) administer...
Individuals with differences/disorders of sex development (DSD) have increased rates of infertili... more Individuals with differences/disorders of sex development (DSD) have increased rates of infertility. For children and youth undergoing prophylactic gonadectomy for malignancy risk, our institution offers gonadal tissue cryopreservation, an experimental technique to preserve fertility cryopotential. An 11-year-old girl with partial androgen insensitivity syndrome presented for evaluation for fertility preservation in the setting of a planned bilateral gonadectomy at an outside institution. At presentation, the patient had begun puberty with an elevated serum androgen level and was experiencing undesired virilization. She expressed a strong female gender identity, an understanding of the various treatment options, and a preference for gonadectomy to prevent further virilization. After thorough counseling with the patient and family in our institution's multidisciplinary DSD clinic, she underwent bilateral gonadectomy with gonadal tissue cryopreservation. Her gonadal pathologic examination demonstrated well-developed peripubertal testes, with present, albeit decreased, numbers of spermatogonial germ cells, decreased Leydig cells, and nonspecific degenerative changes. The patient and her family chose to maintain the cryopreserved tissue for the patient's potential future use. To the best of our knowledge, the present case is the first reported case of gonadal tissue cryopreservation in a patient with partial androgen insensitivity syndrome. Storage of gonadal tissue is a feasible method of germ cell preservation in patients with DSD undergoing gonadectomy, although further research advances are required to facilitate development of this tissue into mature gametes capable of biological fertility.
Increasing numbers of transgender adolescents are presenting for transition-related medical care,... more Increasing numbers of transgender adolescents are presenting for transition-related medical care, including gender-affirming estrogen and testosterone. The decision to transition with hormones has long-term implications, including possible irreversible impairment of future reproductive functioning. The commentary by Hudson, Nahata, Dietz, and Quinn (2017) outlines the importance of fertility counseling for transgender adolescents and young adults as ethical, interdisciplinary practice. Key considerations raised include implementing shared decision-making strategies that account for youths' maturity and individual decisional capacity, evaluating cooccurring psychiatric conditions that could interfere with future-oriented decision-making, and considering benefits and harms of fertility preservation (FP) in the context of a youth's values, identity, and comfort. This report includes two case illustrations of transmasculine youth which highlight how ethical considerations emerge in clinical practice and underscore the nuance and complexity of fertility-related decision-making among transgender adolescents.
The Journal of adolescent health : official publication of the Society for Adolescent Medicine, Jan 18, 2018
Transgender and gender-nonconforming (TGNC) adolescents and young adults experience mental health... more Transgender and gender-nonconforming (TGNC) adolescents and young adults experience mental health problems, including anxiety and depression, at an elevated rate as compared to their cisgender counterparts. A growing literature suggests that vulnerability to psychiatric problems in TGNC individuals results from social discrimination and minority stress. The sample consisted of adolescent TGNC patients (N = 109) who completed behavior health screening questionnaires as standard of care at their first clinical visit to an interdisciplinary gender program within a pediatric academic medical center in a metropolitan Midwestern city. Binary logistic regressions were used to assess whether the likelihood that participants met clinical diagnostic criteria for Major Depressive Disorder (MDD) and Generalized Anxiety Disorder (GAD) was predicted by gender identity appearance congruence, proximal forms of minority stress (e.g., negative expectations of the future related to gender identity; in...
Heightened public awareness about gender diversity in childhood and adolescence has resulted in m... more Heightened public awareness about gender diversity in childhood and adolescence has resulted in more youth and families seeking medical and mental health services. In response to these needs, there has been nationwide growth in specialized multidisciplinary clinics treating gender-diverse and transgender youth. Despite general agreement that comprehensive treatment is best delivered through a multidisciplinary team by both medical and mental health clinicians with gender-related expertise and familiarity with child and adolescent development, there is currently no consensus regarding the best approach to clinical care with gender-diverse and transgender youth. In this article, we provide a narrative review of the gender affirmative model guiding our clinical practice and describe the development of our unique model of affirming care within the Gender and Sex Development Program at the Ann & Robert H. Lurie Children's Hospital of Chicago.
Peer rejection and deviant peer affiliation are linked consistently to the development and mainte... more Peer rejection and deviant peer affiliation are linked consistently to the development and maintenance of conduct problems. Two proposed models may account for longitudinal relations among these peer processes and conduct problems: the (a) sequential mediation model, in which peer rejection in childhood and deviant peer affiliation in adolescence mediate the link between early externalizing behaviors and more serious adolescent conduct problems; and (b) parallel process model, in which peer rejection and deviant peer affiliation are considered independent processes that operate simultaneously to increment risk for conduct problems. In this review, we evaluate theoretical models and evidence for associations among conduct problems and (a) peer rejection and (b) deviant peer affiliation. We then consider support for the sequential mediation and parallel process models. Next, we propose an integrated model incorporating both the sequential mediation and parallel process models. Future research directions and implications for prevention and intervention efforts are discussed.
Uploads
Papers by Diane Chen