"Difficult to Find, Stressful to Navigate": Parents' Experiences Accessing Affirming Care for Gender-Diverse Youth.

2023

05/2023

2325-8306

Gender-diverse youth (GDY) face significant health disparities, which can be mitigated by gender-affirming medical care. Understanding parents' experiences seeking care for their GDY can identify barriers to care and improve access. This study sought to understand parents' experiences accessing gender-affirming medical care with their GDY. We asked parents of GDY in the United States to describe their experiences with gender-affirming medical care through a single open-ended item on an online survey disseminated through social media in February of 2020. Open-ended survey responses were analyzed through inductive thematic analysis by two authors using an iteratively developed codebook adjudicated by consensus. This codebook was used to identify key themes. We analyzed 277 responses from majority White (93.9%) parents from 41 U.S. states. Themes included (1) Experiences accessing care: finding a provider, financial and insurance-related considerations, the impact of geography on care access; (2) Experiences receiving care: factors in successful or unsuccessful patient-provider interactions, differing approaches to initiating care, sense of community with other families; and (3) Outcomes related to receiving care: how care for their child was perceived to be lifesaving or helped their child thrive. Parents highlighted how access to gender-affirming medical care improved their GDY's health and wellbeing, and described numerous barriers they experienced with finding and receiving this care. Given the evidence that gender-affirming medical care mitigates health disparities, providers, policymakers, insurance companies, and health systems leaders should urgently address these challenges to ensure equitable receipt of care for all GDY.

10.1089/lgbt.2021.0468

LGBT Health

37184531

Transgender Youth Experiences with Implantable GnRH Agonists for Puberty Suppression.

2022

364-368

08/2022

2688-4887

This descriptive study reports caregiver experiences with GnRH agonist implants among a cohort of youth followed in a pediatric hospital-based gender clinic. We administered a survey to 36 of 55 eligible caregivers ascertaining demographics and satisfaction, with a medical record review of any surgical complications. The overwhelming majority (97.1%) reported satisfaction with the procedure and would undergo the implant procedure again (94.4%). The most frequent challenges noted were about affordability (39.8%) and insurance denials (39.8%). Implantable GnRH agonist can be used successfully in pediatric patients with gender dysphoria. Future policy should seek to address concerns regarding insurance approval and reimbursement.

10.1089/trgh.2021.0006

Transgend Health

36033209

Assessing and Addressing Cardiovascular Health in People Who Are Transgender and Gender Diverse: A Scientific Statement From the American Heart Association.

2021

CIR0000000000001003

2021 Jul 08

1524-4539

<p>There is growing evidence that people who are transgender and gender diverse (TGD) are impacted by disparities across a variety of cardiovascular risk factors compared with their peers who are cisgender. Prior literature has characterized disparities in cardiovascular morbidity and mortality as a result of a higher prevalence of health risk behaviors. Mounting research has revealed that cardiovascular risk factors at the individual level likely do not fully account for increased risk in cardiovascular health disparities among people who are TGD. Excess cardiovascular morbidity and mortality is hypothesized to be driven in part by psychosocial stressors across the lifespan at multiple levels, including structural violence (eg, discrimination, affordable housing, access to health care). This American Heart Association scientific statement reviews the existing literature on the cardiovascular health of people who are TGD. When applicable, the effects of gender-affirming hormone use on individual cardiovascular risk factors are also reviewed. Informed by a conceptual model building on minority stress theory, this statement identifies research gaps and provides suggestions for improving cardiovascular research and clinical care for people who are TGD, including the role of resilience-promoting factors. Advancing the cardiovascular health of people who are TGD requires a multifaceted approach that integrates best practices into research, health promotion, and cardiovascular care for this understudied population.</p>

10.1161/CIR.0000000000001003

Circulation

34235936

Measuring and Addressing Inequities in Health Care Access for Transgender and Gender Diverse Youth in the U.S.

2021

431-432

2021 Mar

1879-1972

10.1016/j.jadohealth.2020.12.125

J Adolesc Health

33610230

Experience of Chest Dysphoria and Masculinizing Chest Surgery in Transmasculine Youth.

2021

2021 Feb 03

1098-4275

<p><strong>OBJECTIVES: </strong>Transmasculine individuals, those assigned female sex at birth but who identify as masculine, have high rates of suicidal behavior and often suffer from chest dysphoria (discomfort and distress from unwanted breast development). Growing numbers of transmasculine youth are pursuing definitive treatment with masculinizing chest surgery (MCS), and adult studies reveal marked benefits of MCS, although little is known about the impact of chest dysphoria on transmasculine youth or the optimal timing of MCS. In this study, we aimed to explore youth experiences of chest dysphoria and the impact of MCS.</p>

<p><strong>METHODS: </strong>Transmasculine youth aged 13 to 21 were recruited from a pediatric hospital-based gender clinic. Participants completed a semistructured qualitative interview exploring the experience of chest dysphoria and thoughts about or experiences with MCS. Interview transcripts were coded by 3 investigators employing modified grounded theory, with the median interrater reliability at κ = 0.92.</p>

<p><strong>RESULTS: </strong>Subjects ( = 30) were a mean age of 17.5 years, and 47% had undergone MCS. Youth reported that chest dysphoria triggered strong negative emotions and suicidal ideation, caused a myriad of functional limitations, and was inadequately relieved by testosterone therapy alone. All post-MCS youth reported near or total resolution of chest dysphoria, lack of regret, and improved quality of life and functioning.</p>

<p><strong>CONCLUSIONS: </strong>We observed consensus that chest dysphoria is a major source of distress and can be functionally disabling to transmasculine youth. MCS performed during adolescence, including before age 18, can alleviate suffering and improve functioning. Additional research is needed to develop patient-reported outcome measures to assess the impact of chest dysphoria and MCS.</p>

10.1542/peds.2020-013300

Pediatrics

33536330

Predictors of Internet Health Information-Seeking Behaviors Among Young Adults Living With HIV Across the United States: Longitudinal Observational Study.

2020

e18309

2020 11 02

1438-8871

<p><strong>BACKGROUND: </strong>Consistent with young adults' penchant for digital communication, young adults living with HIV use digital communication media to seek out health information. Understanding the types of health information sought online and the characteristics of these information-seeking young adults is vital when designing digital health interventions for them.</p>

<p><strong>OBJECTIVE: </strong>This study aims to describe characteristics of young adults living with HIV who seek health information through the internet. Results will be relevant to digital health interventions and patient education.</p>

<p><strong>METHODS: </strong>Young adults with HIV (aged 18-34 years) self-reported internet use during an evaluation of digital HIV care interventions across 10 demonstration projects in the United States (N=716). Lasso (least absolute shrinkage and selection operator) models were used to select characteristics that predicted whether participants reported seeking general health and sexual and reproductive health (SRH) information on the internet during the past 6 months.</p>

<p><strong>RESULTS: </strong>Almost a third (211/716, 29.5%) and a fifth (155/716, 21.6%) of participants reported searching for general health and SRH information, respectively; 26.7% (36/135) of transgender young adults with HIV searched for gender-affirming care topics. Areas under the curve (&gt;0.70) indicated success in building models to predict internet health information seeking. Consistent with prior studies, higher education and income predicted health information seeking. Higher self-reported antiretroviral therapy adherence, substance use, and not reporting transgender gender identity also predicted health information seeking. Reporting a sexual orientation other than gay, lesbian, bisexual, or straight predicted SRH information seeking.</p>

<p><strong>CONCLUSIONS: </strong>Young adults living with HIV commonly seek both general health and SRH information online, particularly those exploring their sexual identity. Providers should discuss the most commonly sought SRH topics and the use of digital technology and be open to discussing information found online to better assist young adults with HIV in finding accurate information. Characteristics associated with health information-seeking behavior may also be used to develop and tailor digital health interventions for these young adults.</p>

10.2196/18309

J Med Internet Res

33136057

Intersectionality and Health Inequities for Gender Minority Blacks in the U.S.

2020

2020 Aug 05

1873-2607

<p><strong>INTRODUCTION: </strong>Gender minority blacks represent the intersection of multiply marginalized populations that experience severe health inequities in the U.S. However, few studies focus on the unique health experiences of this multiply disadvantaged population. This study quantifies the health inequities experienced by gender minority blacks in the U.S. using an intersectional framework.</p>

<p><strong>METHODS: </strong>This cross-sectional study analyzed data in 2018/2019 from the Behavioral Risk Factor Surveillance System, including all cisgender black, gender minority black, and gender minority white survey respondents who completed the gender identity module between 2014 and 2018. Investigators compared demographics, healthcare access, behavioral risk factors, chronic conditions, and perceived health status of gender minority blacks with those of cisgender blacks and gender minority whites.</p>

<p><strong>RESULTS: </strong>In the primary analysis of weighted survey data, gender minority blacks were more likely to report experiencing severe mental distress (AOR=1.99, 95% CI=1.14, 3.47, p=0.02), longer periods of being physically or mentally unwell (adjusted RR=1.36, 95% CI=1.17, 1.59, p&lt;0.001), and longer periods of activity limitations owing to poor health (adjusted RR=1.53, 95% CI=1.01, 1.41, p=0.003) than cisgender blacks. In a matched analysis, gender minority blacks had worse self-reported health than both cisgender blacks (OR=1.32, 95%: CI=1.05, 1.67, p=0.02) and gender minority whites (OR=1.53, 95% CI=1.15, 2.04, p=0.003).</p>

<p><strong>CONCLUSIONS: </strong>Gender minority blacks have health experiences that are distinct from those of both the cisgender black and gender minority populations with which they intersect. Health policies and programs, including data collection efforts, must specifically consider this multiply marginalized population to effectively advance health equity.</p>

10.1016/j.amepre.2020.04.013

Am J Prev Med

32792281

Attitudes Toward Fertility Preservation Among Transgender Youth and Their Parents.

2020

2020 Apr 29

1879-1972

<p><strong>PURPOSE: </strong>While gender-affirming hormones (GAH) may impact the fertility of transgender and gender diverse (TGGD) youth, few pursue fertility preservation (FP). The objective of this study is to understand youth and parent attitudes toward FP decision-making.</p>

<p><strong>METHODS: </strong>This study is a cross-sectional survey of youth and parents in a pediatric, hospital-based gender clinic from April to December 2017. Surveys were administered electronically, containing 34 items for youth and 31 items for parents regarding desire for biological children, willingness to delay GAH for FP, and factors influencing FP decisions.</p>

<p><strong>RESULTS: </strong>The mean age of youth (n&nbsp;= 64) was 16.8&nbsp;years, and 64% assigned female at birth; 46 parents participated. Few youth (20%) and parents (13%) found it important to have biological children or grandchildren, and 3% of youth and 33% of parents would be willing to delay GAH for FP. The most common factor influencing youth FP decision-making was discomfort with a body part they do not identify with (69%), and for the parents, whether it was important to their child (61%). In paired analyses, youth and their parents answered similarly regarding youth desire for biological children and willingness to delay GAH for FP.</p>

<p><strong>CONCLUSIONS: </strong>The majority of TGGD youth and parents did not find having biological offspring important and were not willing to delay GAH for FP. Discomfort with reproductive anatomy was a major influencing factor for youth FP decision-making and their child's wishes was a major factor for parents. Future qualitative research is needed to understand TGGD youth and parent attitudes toward FP and to develop shared decision-making tools.</p>

10.1016/j.jadohealth.2020.02.027

J Adolesc Health

32359942

Opportunities and Challenges for Previsit Screening for Sexual and Gender Identity Among Adolescents in Primary Care.

2020

133-134

2020 Feb

1879-1972

<p>Many sexual minority youth are at higher risk for poor health outcomes because of stigma, shame, and discrimination they may face because of their identity. Professional guidelines, including the American Academy of Pediatrics' Bright Futures, encourage discussion of sexual attraction and behavior in adolescent health supervision visits so that clinicians can support healthy adolescent sexual development, assure that the health needs of youth of all sexual identities are met, and facilitate family acceptance and support of youth when needed. Although these discussions have been recommended as best practice for many years, we know that pediatricians generally spend little time addressing sexual health. In one study of audio-recorded pediatric well visits, one-third spent no time discussing sexuality or sexual health, and the average amount of time spent was only 36&nbsp;seconds. To address this gap between recommendations and practice, some pediatric providers are incorporating questions about sexuality into electronic or other previsit screening tools. In this issue of the <em>Journal of Adolescent Health</em>, Parmar et&nbsp;al. are the first to report findings from a large-scale implementation of a standardized assessment of sexual attraction at adolescent health supervision visits.</p>

10.1016/j.jadohealth.2019.11.298

J Adolesc Health

31952564

Sexual and reproductive health considerations among transgender and gender-expansive youth.

2019

100684

2019 Nov 14

1538-3199

<p>Sexual and reproductive health are an integral part of all youths' health and wellbeing, including youth who are transgender and gender-expansive. This article will discuss general approaches to the sexual and reproductive health care of transgender and gender-expansive youth, and review the topics of contraception and menstrual suppression, fertility preservation and family building, and the prevention and treatment of sexually transmitted infections and HIV in this population. Although transgender youth on testosterone therapy often become amenorrheic, ovulation and pregnancy can still occur, and thus all youth on testosterone therapy should be counseled on the potential for pregnancy and have access to effective contraception. Many forms of hormonal contraceptives are both safe and efficacious when used by youth on testosterone therapy. Hormonal contraceptives may also be used to provide menstrual suppression for those experiencing dysphoria from unwanted uterine bleeding. All transgender youth should receive counseling on fertility preservation and reproductive options prior to starting pubertal blockers and/or gender-affirming hormones, therapies that have varying effects on long-term fertility potential. Several different methods of fertility preservation exist, however there are numerous barriers to transgender youth receiving fertility preservation services, and rates of utilization of these services is low. Transgender individuals suffer from a disproportionate burden of HIV compared to their peers-thought to result from stigma, marginalization, and lack of access to appropriate care. All providers caring for youth should be informed about HIV pre-exposure prophylaxis (PrEP) and HIV post-exposure prophylaxis (PEP), which may help to prevent HIV acquisition.</p>

10.1016/j.cppeds.2019.100684

Curr Probl Pediatr Adolesc Health Care

31735693