"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

Multicenter Analysis of Cardiometabolic-Related Diagnoses in Transgender and Gender Diverse Youth: a PEDSnet study.

2022

08/2022

1945-7197

CONTEXT: Studies on cardiometabolic health in transgender and gender diverse youth (TGDY) are limited to small cohorts.

OBJECTIVE: To determine the odds of cardiometabolic-related diagnoses in TGDY compared to matched controls in a cross-sectional analysis, using a large, multisite database (PEDSnet).

DESIGN: Electronic health record data (2009-2019) were used to determine odds of cardiometabolic-related outcomes based on diagnosis, anthropometric and laboratory data using logistic regression among TGDY youth vs. controls. The association of gender affirming hormone therapy (GAHT) with these outcomes was examined separately among TGDY.

SETTING: Six PEDSnet sites.

PATIENTS OR OTHER PARTICIPANTS: TGDY (n=4,172) were extracted from PEDSnet and propensity-score matched on 8 variables to controls (n=16,648).

INTERVENTION(S): N/A.

MAIN OUTCOME MEASURE(S): Odds of having cardiometabolic-related diagnoses among TGDY compared to matched controls, and among TGDY prescribed GAHT compared to those not prescribed GAHT.

RESULTS: In adjusted analyses, TGDY had higher odds of overweight/obesity (1.2 [95% confidence interval 1.1-1.3]) than controls. TGDY with a testosterone prescription alone or in combination with a gonadotropin releasing hormone agonist (GnRHa) had higher odds of dyslipidemia (1.7 [1.3-2.3], 3.7 [2.1-6.7], respectively) and liver dysfunction (1.5 [1.1-1.9], 2.5 [1.4-4.3]) than TGDY not prescribed GAHT. TGDY with a testosterone prescription alone had higher odds of overweight/obesity (1.8 [1.5-2.1]) and hypertension (1.6 [1.2-2.2]) than those not prescribed testosterone. Estradiol and GnRHa alone were not associated with greater odds of cardiometabolic-related diagnoses.

CONCLUSIONS: TGDY have increased odds of overweight/obesity compared to matched controls. Screening and tailored weight management, sensitive to the needs of TGDY, are needed.

10.1210/clinem/dgac469

J Clin Endocrinol Metab

35945152

Behavioral Health Diagnoses in Youth With Gender Dysphoria Compared with Controls: A PEDSnet Study.

2021

2021 Sep 24

1097-6833

<p><strong>OBJECTIVE: </strong>To assess the odds of a psychiatric or neurodevelopmental diagnosis among youth with a diagnosis of gender dysphoria compared with matched controls in a large electronic health record dataset from six pediatric health systems, PEDSnet. We hypothesized that youth with gender dysphoria would have higher odds of having psychiatric and neurodevelopmental diagnoses than controls.</p>

<p><strong>STUDY DESIGN: </strong>All youth with a diagnosis of gender dysphoria (n=4,173 age at last visit 16.2 + 3.4) and at least one outpatient encounter were extracted from the PEDSnet database and propensity-score matched on 8 variables to controls without gender dysphoria (n=16,648, age at last visit 16.2 + 4.8) using multivariable logistic regression. The odds of having psychiatric and neurodevelopmental diagnoses were examined using generalized estimating equations.</p>

<p><strong>RESULTS: </strong>Youth with gender dysphoria had higher odds of psychiatric (OR: 4.0 [95% CI: 3.8, 4.3] P &lt; .0001) and neurodevelopmental diagnoses (1.9 [1.7, 2.0], p&lt;0.0001). Youth with gender dysphoria were more likely to have a diagnosis across all psychiatric disorder sub-categories, with particularly high odds of mood disorder (7.3 [6.8, 7.9], p&lt;0.0001) and anxiety (5.5 [5.1, 5.9], p&lt;0.0001). Youth with gender dysphoria had a greater odds of autism spectrum disorder (2.6, [2.2, 3.0], p&lt;0.0001).</p>

<p><strong>CONCLUSIONS: </strong>Youth with gender dysphoria at large pediatric health systems have greater odds of psychiatric and several neurodevelopmental diagnoses compared with youth without gender dysphoria. Further studies are needed to evaluate changes in mental health over time with access to gender affirming care.</p>

10.1016/j.jpeds.2021.09.032

J Pediatr

34571022

"This Could Mean Death for My Child": Parent Perspectives on Laws Banning Gender-Affirming Care for Transgender Adolescents.

2020

2020 Oct 13

1879-1972

OBJECTIVES: Numerous U.S. state legislatures have proposed bills to ban gender-affirming medical interventions for minors. Parents and caregivers play a critical role in advocating for and supporting their transgender and gender-diverse youth (TGDY). We aimed to understand parent and caregiver perspectives about this potential legislation and perceived effects on their TGDY's mental health.

METHODS: We developed and launched a social-media based, anonymous online survey in February 2020 to assess parent and caregiver perspectives on proposed laws to ban gender-affirming medical interventions for minors. Participants were asked to respond to two open-ended questions about these laws; responses were coded to identify key themes.

RESULTS: We analyzed responses from 273 participants from 43 states. Most identified as white (86.4%) female (90.0%) mothers (93.8%), and 83.6% of their TGDY had received gender-affirming medical interventions before age 18 years. The most salient theme, which appeared in the majority of responses, described parent and caregiver fears that these laws would lead to worsening mental health and suicide for their TGDY. Additional themes included a fear that their TGDY would face increased discrimination, lose access to gender-affirming medical interventions, and lose autonomy over medical decision-making due to government overreach.

CONCLUSIONS: In this convenience sample, parents and caregivers overwhelmingly expressed fear that the proposed legislation will lead to worsening mental health and increased suicidal ideation for their TGDY. They implored lawmakers to hear their stories and to leave critical decisions about gender-affirming medical interventions to families and their medical providers.

10.1016/j.jadohealth.2020.09.010

J Adolesc Health

33067153