Pediatric Palliative Care of a Transgender Adolescent.

A 15-year-old patient with metastatic synovial sarcoma conveyed to his palliative care physician that his dying wish was to start gender-affirming hormone therapy. His medical team was able to identify resources to support both him and his family as they navigated the immense difficulty of a cancer diagnosis and began to understand their child's gender identity. Literature on the care of gender diverse pediatric patients with terminal illness is minimal, but applications from adult literature, and research on supporting gender diverse adolescents more broadly, provided guidance for palliative care, oncology, and gender-affirming care teams. We believe that honoring and supporting the gender identity of adolescents with terminal illness is an essential aspect of end-of-life care. This case report outlines challenges faced by multidisciplinary pediatric team members who provided gender-affirming care for a minor under hospice care and amplifies the need for future research and guidelines pertinent to this patient population.

Estimating Transgender and Gender-Diverse Youth Populations in Health Systems and Survey Data.

OBJECTIVES: To identify and examine demographic variation in estimates of gender-diverse youth (GDY) populations from the PEDSnet learning health system network and the Youth Risk Behavior Survey (YRBS). METHODS: The PEDSnet sample included 14- to 17-years-old patients who had ≥2 encounters at a member institution before March 2022, with at least 1 encounter in the previous 18 months. The YRBS sample included pooled data from 14- to 17-year-old in-school youth from the 2017, 2019, and 2021 survey years. Adjusted logistic regression models tested for associations between demographic characteristics and gender dysphoria (GD) diagnosis (PEDSnet) or self-reported transgender identity (YRBS). RESULTS: The PEDSnet sample included 392 348 patients and the YRBS sample included 270 177 youth. A total of 3453 (0.9%) patients in PEDSnet had a GD diagnosis and 5262 (1.9%) youth in YRBS self-identified as transgender. In PEDSnet, adjusted logistic regression indicated significantly lower likelihood of GD diagnosis among patients whose electronic medical record-reported sex was male and among patients who identified as Asian, Black/African American, and Hispanic/Latino/a/x/e. In contrast, in the YRBS sample, only youth whose sex was male had a lower likelihood of transgender identity. CONCLUSIONS: GDY are underrepresented in health system data, particularly those whose electronic medical record-reported sex is male, and Asian, Black/African American, and Hispanic/Latino/a/x/e youth. Collecting more accurate gender identity information in health systems and surveys may help better understand the health-related needs and experiences of GDY and support the development of targeted interventions to promote more equitable care provision.

Desire for Gender-Affirming Medical Care Before Age 18 in Transgender and Nonbinary Young Adults.

Purpose: We aimed to understand transgender and nonbinary (TNB) young adults' desire to receive gender-affirming medical care (GAMC) before age 18 and identify barriers and facilitators to receiving this care in adolescence. Methods: A cross-sectional survey was administered to TNB young adults presenting for care between ages 18 and 20 in 2023. Descriptive statistics characterized the sample, χ2 tests with post hoc pairwise comparisons identified differences in desire for gender-affirming medications, outness, and parental consent by gender identity and sex assigned at birth, and t-tests evaluated differences in barriers and facilitators to receiving care by outness to parents. Results: A total of 230 TNB respondents had complete data. Nearly all (94.3%) indicated they desired GAMC before age 18. Half (55.7%) of the respondents reported being out about their gender identity to a parent before age 18. Outness, discussing desire for GAMC, and asking for consent to receive GAMC from a parent were significantly more common among participants who identified as men compared to those who identified as women and among those assigned female at birth compared to those assigned male at birth. No such differences emerged when comparing nonbinary individuals to those who identified as men or women. Lack of parental willingness to consent for GAMC was cited as the primary contributor of not having received care in adolescence. Conclusions: Many TNB young adults desire GAMC in adolescence; however, lack of parental support is a key barrier to receiving this care, suggesting a need for more readily available resources for parents to support TNB adolescents.

Caregiver perspectives on receiving gender-affirming care with their transgender and gender diverse adolescents via telemedicine.

Telemedicine may help improve access to gender-affirming care for transgender and gender diverse (TGD) adolescents. Parents or guardians (i.e., caregivers) of TGD adolescents play a critical role in supporting TGD adolescents in accessing this care. The purpose of this study was to explore caregivers' perspectives regarding their adolescent receiving pediatric gender-affirming care via telemedicine to help providers and health systems optimize this modality for future care delivery. Caregivers (n=18) of TGD adolescents ages 14-17 participated in semi-structured, individual interviews that were transcribed and analyzed qualitatively. Caregivers cited participating in visits from their home environment, decreased anxiety, COVID safety, ability to have more family members attend, no transportation demands, and effective delivery of care as advantages of telemedicine. Disadvantages included dysphoria or discomfort with self-image, impersonal provider-patient interactions, video teleconferencing fatigue, difficulty with portal navigation, connectivity issues, and lack of privacy. Caregivers largely deferred to their child's preference regarding the choice of visit modality, but many reported a preference for the first to be conducted in-person, and follow-up and less complex visits via telemedicine. Health systems should consider these perspectives as they adapt telemedicine infrastructure to better meet the needs of patients and their families.

Telemedicine-Based Provision of Adolescent Gender-Affirming Medical Care to Promote Equitable Access.

Purpose: To explore transgender and nonbinary (TNB) young adults' (1) interest in receiving gender-affirming medications through telemedicine before age 18 years and (2) willingness to initiate this care with primary care providers (PCPs). Methods: Data were from a survey of TNB young adults who had not received gender-affirming medications before age 18 years. Chi-square and Wald tests identified demographic differences in telemedicine interest and willingness to initiate medications with their PCP as minors. Results: Among 280 respondents, 82.5% indicated interest in telemedicine and 42.0% were willing to initiate medications with their PCP. Black/African American respondents were more likely to indicate interest in telemedicine than White and multiracial respondents. Respondents from rural areas were more likely to indicate willingness to initiate medications with their PCP than those from urban areas. Conclusions: Telemedicine expansion and further support for PCPs may represent critical opportunities to promote equitable access to adolescent gender-affirming care.

Comfort Providing Gender-Affirming Care and Preferences for Consultative Support Among Rural Pediatric Primary Care Providers.

Objective: To examine how specialist-to-pediatric primary care provider (PPCP) consultative support may impact PPCP comfort in providing gender-affirming care. Methods: PPCPs in West Virginia completed an electronic survey. T-tests compared comfort providing gender-affirming care and rank-sum tests compared the practicality of four consultative support modalities by time in practice and specialty. Results: Of 51 participants, 47.1% had been in practice for <10 years and 59.6% were trained in pediatrics. PPCPs with <10 years in practice and those trained in pediatrics were more comfortable providing gender-affirming care than those in practice >10 years and those trained in family medicine. PPCPs felt that telemedicine was more practical than tele-education, although they reported all consultative support modalities would increase comfort providing this care. Conclusions: Access to consultative support can increase PPCP comfort providing gender-affirming care, although certain modalities may be more effective for PPCPs with varying levels of experience and specialty training.

Pediatric Gender Care in Primary Care Settings in West Virginia: Provider Knowledge, Attitudes, and Educational Experiences.

PURPOSE: Pediatric primary care providers (PPCPs) often care for gender diverse youth (GDY), particularly in rural areas, but little is known about their relevant knowledge, attitudes, or educational experiences regarding caring for this population. METHODS: This study surveyed PPCPs throughout the rural state of West Virginia using an online survey assessing 1) demographics, 2) knowledge, 3) attitudes, and 4) educational experiences. Knowledge and attitude scores were calculated and proportion-tests and t-tests were used to compare these scores by PPCP characteristics including age, time in practice, and training background. RESULTS: In total, 51 PPCPs from throughout the state completed the survey and 82% had cared for GDY in the prior year. Younger providers (

Nine Ways Parents Can Support Their Gender Diverse Children.

Parental support is associated with improved mental health outcomes for gender diverse youth (GDY). Parents often seek guidance from pediatric providers, but few studies explore what actions make GDY feel supported. Using a qualitative analysis of open-ended survey responses, we aimed to identify ways in which GDY want to be supported by their parents or caregivers. Nine key themes were identified, including using affirming language at home and other settings as desired by GDY, seeking education, and aiding in accessing affirming items and care. Findings from this study can help pediatric medical and mental health providers help parents to support their GDY.

Demographic Differences in Gender Dysphoria Diagnosis and Access to Gender-Affirming Care Among Adolescents.

Purpose: The goal of this article was to identify demographic differences in receipt of gender dysphoria (GD) diagnosis and access to gender-affirming care (GAC) among adolescents whose gender identity and/or pronouns differed from their sex assigned at birth. Methods: Data were from 2444 patients who were 13-17 years old and had a documented gender identity and/or pronouns that differed from their sex assigned at birth in the electronic health record. Adjusted logistic regression models explored associations between demographic characteristics (sex assigned at birth, gender identity, race and ethnicity, language, insurance type, rural status) and presence of GD diagnosis and having accessed GAC. Results: The average predicted probability (Pr) of having received a GD diagnosis was 0.62 (95% confidence interval [CI] = 0.60-0.63) and of having accessed GAC was 0.48 (95% CI = 0.46-0.50). Various significant demographic differences emerged. Notably, Black/African American youth were the least likely to have received a GD diagnosis (Pr = 0.43, 95% CI = 0.33-0.54) and accessed GAC (Pr = 0.32, 95% CI = 0.22-0.43). Although there were no significant differences in GD diagnosis by insurance type, youth using Medicaid, other government insurance, or self-pay/charity care were less likely to have accessed GAC compared with youth using commercial/private insurance. Conclusion: Results indicate significant differences in both receipt of GD diagnosis and accessing GAC by various demographic characteristics, particularly among Black/African American youth. Identification of these differences provides an opportunity to further understand potential barriers and promote more equitable access to GAC among adolescents who desire this care.

Evaluating an Electronic Consultation Platform to Support Pediatric Primary Care Providers in Caring for Transgender and Nonbinary Adolescents.

Background: An electronic consultation (e-consult) platform was implemented to support pediatric primary care providers (PCPs) in providing gender-affirming care to transgender and nonbinary (TNB) adolescents. Following implementation, a study was conducted to (1) explore how access to this e-consult platform impacts PCP confidence and referral patterns, (2) describe the content of questions, and (3) evaluate PCP's perspectives regarding platform usability. Methods: Following each submission, providers completed a 17-item survey. A total of 20 providers submitted 38 e-consults and 26 follow-up surveys between October 2021 and December 2022. Results: All PCPs reported a high overall value and increased confidence caring for TNB adolescents. Nearly one in five (19%) felt it allowed them to avoid submitting a specialty referral. Mean System Usability Scale score was 78.2 indicating good usability. Conclusion: This e-consult platform shows great promise in increasing PCP confidence providing gender-affirming care adolescents. More widespread utilization could help improve access to care and decrease specialty care referrals.

Parents of Gender Diverse Youth: Support Sought, Received, and Still Needed.

PURPOSE: Gender diverse youth (GDY) have improved mental health when affirmed by parents, but little is known about the support parents of GDY seek, receive, and still need. This qualitative study explored experiences of parents of GDY to better understand their support needs. METHODS: Parents of GDY submitted videos and were interviewed about their journey supporting their GDY. Data collection continued until thematic saturation was reached. Audio recordings from videos and interviews were transcribed and analyzed via an inductive thematic analysis using the rigorous and accelerated data reduction technique. RESULTS: In total, 25 parents of GDY (mean age 15 years, range 6-21 years) from 12 states provided video recordings and interviews; 36% were People of Color and 28% were fathers. We identified four themes and 12 subthemes. Theme 1: support through education included acknowledging ignorance about gender diversity and remedying ignorance. Theme 2: engaging community noted that support was multilayered and based around the family unit and pre-existing community. Theme 3: expanding community included acknowledgement that seeking new community was important for many to reduce feelings of isolation. It also highlighted that "safe spaces" for parents of GDY were not always safe for those of other marginalized groups, particularly People of Color. Theme 4: support in healthcare spaces centered experiences navigating medical and mental healthcare for GDY and feeling supported and unsupported in those spaces. DISCUSSION: Parents identified numerous ways they sought, received, and needed support to understand and affirm their GDY. These findings will aid development of targeted support interventions for parents of GDY. Further research is needed to evaluate the impact of these interventions on GDY health.

Social Support for Rural Gender Diverse Youth Compared to Cisgender Peers.

PURPOSE: Gender diverse youth (GDY) experience higher rates of mental health concerns than their cisgender peers, but these can be ameliorated by feeling support from family, school, and community. Little is known about how youth perceptions of support vary by gender identity, especially for younger adolescents and those living in rural areas. METHODS: Youth ages 12-19 years completed anonymous surveys including measures of perceived support and a two-step gender identity question. GDY (n = 206) were further categorized into binary and nonbinary gender identities. An additional 500 randomly selected cisgender youth were included for comparison. Multivariate analyses of variance with Tukey post hoc tests were employed to test GDY group differences while accounting for the interaction between scaled measures. RESULTS: Cisgender youth had the highest perceived support across all support measures while youth who shared both binary and nonbinary aspects of their gender identity had the lowest rates of perceived support. The F tests for between-subject effects were statistically significant (p <.001) for all six support measures, and multivariate group testing was statistically significant with Wilks' λ 6.38(18,1621.17) = 0.82; p <.001. DISCUSSION: Despite research demonstrating a strong association between perceived support and improved mental health outcomes, GDY in our sample had lower rates of perceived support at the family, school, and community levels. GDY with both binary and nonbinary gender identities had the lowest levels of perceived support. Further research is needed to see if this finding is consistent in other populations and to develop targeted interventions to improve perceived support for this population.

Adolescent Providers' Experiences of Harassment Related to Delivering Gender-Affirming Care.

PURPOSE: The politicization of adolescent gender-affirming care has occurred alongside targeted harassment (e.g., threats of violence, doxing, bomb threats) of adolescent gender-affirming care providers across the United States. This study sought to explore their experiences of targeted harassment. METHODS: From October to December 2022, mental and physical health gender-affirming care providers from across the United States completed a survey including open-ended questions about the kinds of harassment they experienced (i.e., method and messages of harassment) and its impact on their lives and practices. Thematic analyses were used to analyze their responses. RESULTS: In total, 117 providers completed the survey and 70% shared that either they, their practice, or their institution had received threats specific to delivering gender-affirming care. The most common experiences were threats via social media or mailed letters. Several received death threats. Providers described how targeted harassment impacted their psychological well-being and required them to reassess clinic safety. Additionally, providers expressed the need for a more accurate representation of gender-affirming care in media and stronger advocacy from institutions and organizations emphasizing the importance of this care. DISCUSSION: Adolescent gender-affirming care providers are experiencing targeted harassment, significantly affecting their ability to deliver care to transgender and gender-diverse adolescents and their families. Providers stressed the importance of receiving support from their institutions to ensure their safety. The ongoing sociopolitical climate related to gender-affirming care coupled with targeted harassment of those providing it will further limit access to this care.

Adolescent Perspectives on the Use of Telemedicine for Confidential Health Care: An Exploratory Mixed-Methods Study.

PURPOSE: Telemedicine can improve access to adolescent health care, but adolescents may experience barriers to accessing this care confidentially. Gender-diverse youth (GDY) may especially benefit from telemedicine through increased access to geographically limited adolescent medicine subspecialty care but may have unique confidentiality needs. In an exploratory analysis, we examined adolescents' perceived acceptability, preferences, and self-efficacy related to using telemedicine for confidential care. METHODS: We surveyed 12- to 17-year-olds following a telemedicine visit with an adolescent medicine subspecialist. Open-ended questions assessing acceptability of telemedicine for confidential care and opportunities to enhance confidentiality were qualitatively analyzed. Likert-type questions assessing preference for future use of telemedicine for confidential care and self-efficacy to complete components of telemedicine visits confidentially were summarized and compared across cisgender versus GDY. RESULTS: Participants (n = 88) included 57 GDY and 28 cisgender females. Factors affecting the acceptability of telemedicine for confidential care related to patient location, telehealth technology, adolescent-clinician relationships, and quality or experience of care. Perceived opportunities to protect confidentiality included using headphones, secure messaging, and prompting from clinicians. Most participants (53/88) were likely or very likely to use telemedicine for future confidential care, but self-efficacy for completing components of telemedicine visits confidentially varied by component. DISCUSSION: Adolescents in our sample were interested in using telemedicine for confidential care, but cisgender and GDY recognized threats to confidentiality that may reduce acceptability of telemedicine for these services. Clinicians and health systems should carefully consider youth's preferences and unique confidentiality needs to ensure equitable access, uptake, and outcomes of telemedicine.

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

Purpose: 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. Methods: 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. Results: 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. Conclusions: 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.

Sexual Orientation Among Gender Diverse Youth.

PURPOSE: Many youth are gender diverse, but our understanding of sexual orientation among gender diverse youth (GDY) is limited. We sought to compare sexual identity, attraction, and contact between cisgender youth and GDY and to describe these characteristics across GDY subgroups. METHODS: We analyzed cross-sectional data from school-based surveys of 4,207 adolescents. Two-sample t-tests or chi-squared tests compared characteristics between GDY and cisgender youth. Sexual attraction/contact was summarized with frequencies/proportions and stratified by transmasculine, transfeminine, and nonbinary identities. RESULTS: Two hundred eighty-one (9.1%) youth were GDY. Compared to cisgender peers, GDY were more likely to identify as sexual minority youth. In total, 29.9% of GDY were transmasculine, 36.7% transfeminine, and 33.5% nonbinary. Many transmasculine (45%) and transfeminine (58%) youth identified as heterosexual; most nonbinary youth (91%) identified as sexual minority youth. For transgender youth identifying as heterosexual, sexual attraction/contact varied. DISCUSSION: Aspects of sexuality among GDY remain complex, warranting individualized approaches to sexual/reproductive healthcare.

Leuprolide Acetate for Puberty Suppression in Transgender and Gender Diverse Youth: A Comparison of Subcutaneous Eligard Versus Intramuscular Lupron.

PURPOSE: To compare the efficacy of intramuscular Lupron and subcutaneous Eligard, two formulations of leuprolide, for puberty suppression in transgender and gender diverse (TGD) youth. METHODS: A retrospective chart review of TGD youth receiving Lupron or Eligard 22.5 mg every 3 months was conducted to determine hormone levels obtained 1 hour after an injection (1hrPost) and patient-reported clinical puberty suppression. RESULTS: Forty eight patients were analyzed: 33% assigned female at birth of which 25% were premenarchal, mean age at first injection 13.7 years, and 50% received concurrent gender affirming hormones. Of these, 13% received Lupron, 52% Eligard, and 35% initially received Lupron then transitioned to Eligard due to drug shortages. There were 55 incidents of 1hrPost levels, 42 after Eligard and 13 after Lupron. Clinical puberty suppression occurred in all patients; however, biochemical suppression occurred in 90% of Eligard and 69% of Lupron (p = .06). DISCUSSION: Eligard and Lupron were both effective in suppressing clinical puberty progression in our population of TGD youth, of which 50% were receiving concurrent gender affirming hormones.

Awareness and utilization of pre-exposure prophylaxis and HIV prevention services among transgender and non-binary adolescent and young adults.

Introduction: Transgender and gender non-binary (TGNB) individuals are disproportionally affected by HIV and face high rates of discrimination and stigmatization, resulting in limited access to HIV prevention services. Pre-exposure prophylaxis (PrEP) is highly efficacious for reducing the risk of HIV transmission. However, little research is available regarding PrEP awareness and utilization among TGNB adolescents and young adults (AYA). Methods: TGNB AYA ages 15-24 years old were recruited between December 2021 and November 2022 for participation in a one-time, anonymous online survey study to assess PrEP awareness and perceptions, as well as barriers to its use. Participants were recruited from seven academic centers offering gender-affirming care to TGNB AYA across the United States. Results: Of the 156 TGNB AYA individuals who completed the survey, most (67%) were aware of PrEP; however, few (7%) had been prescribed PrEP. Many (60%) had not spoken to a medical provider and, even if the medication was free and obtained confidentially, most participants did not plan to take PrEP due to low perceived HIV risk, lack of PrEP knowledge, and concern about interactions between their hormone therapy and PrEP. Discussion: These findings underscore the need for broad PrEP educational efforts for both TGNB AYA and their providers to improve knowledge, identify potential PrEP candidates among TGNB AYA and improve access by addressing identified barriers.

Increasing Frequency of Affirmed Name and Pronoun Documentation in a Pediatric Emergency Department.

BACKGROUND AND OBJECTIVES: In a previous study of 204 transgender and gender diverse youth in our region, 44% reported being made to feel uncomfortable in the emergency department (ED) because of their gender identity. The objective of our study was to conduct a 2 year quality improvement project to increase affirmed name and pronoun documentation in the pediatric ED. METHODS: Using process mapping, we identified 5 key drivers and change ideas. The key driver diagram was updated as interventions were implemented over 3 Plan-Do-Study-Act cycles. Our primary outcome, the percentage of ED visits per month with pronouns documented, was plotted on a run chart with the goal of seeing a 50% increase in form completion from a baseline median of ∼14% over the 2 year study period. RESULTS: The frequency of pronoun documentation increased from a baseline median of 13.8% to a median of 47.8%. The most significant increase in pronoun documentation occurred in Plan-Do-Study-Act cycle 3, immediately after ED-wide dissemination of a near-miss case and subsequent call for improvement by ED leadership. Roughly 1.7% of all encounters during the study period involved patients whose pronouns were discordant from the sex listed in their electronic health record. CONCLUSIONS: This quality-improvement project increased the frequency of pronoun documentation in the ED. This has the potential to improve the quality of care provided to transgender and gender diverse youth in the ED setting and identify patients who may benefit from receiving a referral to a pediatric gender clinic for additional support.