Abstract
Purpose:
To describe barriers to care for a cohort of transgender and nonbinary (TNB) youth and examine factors associated with delays in receiving puberty blockers (PBs) or gender-affirming hormones (GAHs).
Methods:
We used longitudinal data from a prospective cohort of TNB youth seeking care at a multidisciplinary pediatric gender clinic between August 2017 and June 2018. We calculated the time between (i) initial clinic contact, (ii) phone intake, (iii) first medical appointment, and (iv) initiating PBs/GAHs. We estimated Kaplan–Meier curves for each time-to-care interval and used Cox regression models to estimate hazard ratios (HRs) for factors hypothesized to be barriers and facilitators of care.
Results:
Our cohort included 104 youth aged 13–20 years. The median time from contacting the clinic to initiating PBs/GAHs was 307 days (range, 54–807). Lower income level, Medicaid insurance, and lack of family support were associated with longer times from contacting the clinic to completing the first medical appointment. In addition, older youth experienced longer times to first medical appointment relative to youth aged 13–14 years. Youth younger than 18 years of age who did not complete a mental health assessment before their first medical appointment experienced delays from first medical appointment to initiating PBs/GAHs (HR=0.44, 95% confidence interval, 0.22–0.88).
Conclusion:
Certain subsets of youth disproportionately experienced delays in receiving gender-affirming medications, and these factors varied by stage of care engagement. Given the association between gender-affirming care and improved mental health, identifying sociostructural and clinic-level barriers to care is critically important to facilitating more equitable access.
Keywords: gender-affirming hormones, health care barriers, mental health assessment, puberty blockers, survival analysis, transgender youth
Introduction
Transgender and nonbinary (TNB) youth experience substantial barriers to accessing affirming, affordable, and timely health care. Barriers to care for TNB youth include the lack of availability of trans-competent medical and mental health pediatric providers, lack of familial support, fear of discrimination from the health care community, disparities in insurance coverage, and lower socioeconomic status.1–4 There also are substantial disparities in access by race/ethnicity, with few Black, Latinx, Native American, and other youth of color represented in referrals to clinics that provide gender-affirming care.5–7 These barriers are more pronounced in certain areas, particularly nonurban and rural settings, where TNB youth are more likely to live further from trans-competent providers.8,9
Access to gender-affirming medical interventions, including puberty blockers (PBs) and gender-affirming hormones (GAHs), improves the well-being and mental health outcomes among youth in the short and long term.10–12 Conversely, delays in receiving PBs/GAHs are associated with increases in depression, anxiety, and suicidality among TNB youth.13,14 Delays and access barriers to gender-affirming interventions can exacerbate numerous sociostructural factors disproportionately experienced by TNB people, including poverty, homelessness, violence, victimization, stigma, and discrimination.15,16 Despite clear and consistent evidence of that gender-affirming care reduces these risks, few TNB youth receive it.17,18
Over the last several years, there has been an increasing number of multidisciplinary gender care centers in the United States that aim to provide coordinated care to TNB youth and their families.6,19 Although these clinics provide critical support to a subset of TNB patients, they are not reaching many or even most youth who experience socioeconomic and geographic barriers or lack familial support.20,21 In addition, these clinics vary widely with respect to requirements and clinical decision-making protocols that govern the receipt of PBs/GAHs.22,23
Pediatric guidelines from the World Professional Association for Transgender Health (WPATH) Standards of Care and The Endocrine Society place a strong emphasis on the importance of mental health assessments (MHAs) before prescribing PBs/GAHs to minors.24,25 In line with this guidance, a majority of pediatric gender clinics currently require these assessments before initiating gender-affirming medications for patients younger than 18 years. Given that TNB disproportionately experience poor mental health outcomes, affirming mental health services are a critical, evidence-based tool for supporting their well-being.26 However, current guidelines do not address the degree to which mandated assessments (i.e., assessments that are required before initiating PBs/GAHs) may create additional access barriers for some youth.27
In this study, we aimed to describe barriers to care for a cohort of TNB youth receiving care at a multidisciplinary pediatric gender clinic and determine whether sociostructural factors or the timing of when youth completed MHA were associated with time to initiating PBs/GAHs as well as several intermediate care timepoints.
Methods
Study population and procedures
Seattle Children's Hospital Gender Clinic (SCGC) opened in October 2016 and at the time was the only multidisciplinary pediatric gender clinic serving TNB adolescents in King County, Washington. Patients were either referred by providers or self-referred to the clinic, which accepted all forms of insurance, including Medicaid and self-pay. All patients and/or their caregivers completed a 1-h telephone intake with a care navigator who is a licensed clinical social worker before scheduling their first medical appointment.
At the time of this study, patients younger than age 18 were required to complete MHAs with their existing therapist or an SCGC mental health provider before receiving PBs/GAHs. When MHAs had already been conducted by a community therapist before the intake, documentation was requested through a questionnaire that was completed by the therapist and sent to the clinic through fax or email. Patients age 18 years or older were not required to complete MHAs and were prescribed GAHs using an informed consent model, in which providers assist patients in making decisions through discussion of the risks and benefits of initiating GAHs.
Data for this analysis are from a prospective longitudinal study that aimed to understand mental and physical health outcomes among TNB youth seen at SCGC in their first year of care. Between August 2017 and June 2018, 169 youth initiated care at SCGC, among whom 161 (95%) were approached about participating in the study before or within 24 h after their first medical appointment. Overall, 9 parents/youth declined participation and 39 did not complete the consent/assent or the baseline survey. The final sample included 113 youth (67% of all youth initiating care).
For minor youth, we obtained caregiver consent and youth assent; for participants age ≥18 years, we only obtained youth consent. Youth and caregiver participants completed separate surveys at the time of their first visit (baseline) and at 3-, 6-, and 12-month follow-up. This analysis is restricted to the 104 participants age ≥13 years who self-reported that they wanted PBs/GAHs. This study received approval from the Seattle Children's Hospital Institutional Review Board (PIROSTUDY15250).
Variables
Demographic and other characteristics were ascertained from youth's baseline surveys. Family support was assessed by a question created de novo by the study team that asked youth whether their gender identity or expression was a source of tension with their caregivers (see Supplementary Data for sample question). Caregiver income was ascertained from caregiver surveys.
We abstracted participant zip codes and the dates of care timepoints through electronic chart review. We recorded the date each of the following occurred: first contact with the clinic, phone intake, first medical appointment, and initiating PBs/GAHs. We calculated driving distance as the number of miles from the center of each participant's zip code to SCGC. Each zip code was determined to be metropolitan, nonmetropolitan urban, and rural based on urban-rural continuum codes.28 We also determined whether patients younger than 18 years completed a MHA before or after their first medical appointment or whether they were older than the age of 18 at the time of being prescribed GAHs.
Statistical analyses
For each youth participant we calculated the number of days between (i) contacting the clinic to completing a phone intake, (ii) completing a phone intake to first medical appointment, (iii) first medical appointment to initiating PBs/GAHs, and finally, (iv) the total time from contacting the clinic to initiating PBs/GAHs (Fig. 1). Times were right censored at the date of the last youth survey completion. We estimated stratified Kaplan–Meier curves and summarized the time to achieving each of care timepoints i–iv (median, interquartile range, and range). We conducted a log-rank test to test the null hypothesis that there is no difference in the time-to-care between the patient subpopulations at any time point.
FIG. 1.
Schematic of time to receiving gender-affirming care. GAH, gender-affirming hormone.
We then used univariate and multivariate Cox regression models to estimate the hazard ratio (HR) associated with time to receiving care for each of the care timepoints. HRs <1.0 correspond with longer times to care and HRs >1.0 correspond with shorter times to care. We included all the variables that we hypothesized to be barriers to care in the multivariate model. We conducted sensitivity analyses that restricted our analysis to only include participants age 13–17 years to determine whether the results were sensitive to the inclusion of nonminors. Analyses were conducted using R statistical software version 3.6.2.
Results
The cohort included 104 youth 13–20 years of age (demographics are reported in Table 1). Participants reported a wide range of caregiver incomes, and the majority of participants had private (57%) or Medicaid insurance (33%). A third of participants reported that their gender identity or expression was a source of tension with their caregivers. The median driving distance youth lived from the clinic was 25 miles (range, 1–509 miles), with 102 (98%) participants traveling from within Washington state and 2 (2%) participants from outside Washington state. The majority (91%) of participants lived in metropolitan areas.
Table 1.
Participant Characteristics Among Transgender and Nonbinary Youth Age 13–20 Years Seeking Care at Seattle Children's Hospital Gender Clinic, 2017–2018
| n | % | |
|---|---|---|
| Total | 104 | 100.0 |
| Gender | ||
| Transgender male or male | 63 | 60.6 |
| Transgender female or female | 27 | 26.0 |
| Nonbinary or gender fluid | 10 | 9.6 |
| I don't know/missing | 4 | 3.8 |
| Race and ethnicity | ||
| Asian/Pacific Islander | 4 | 4.1 |
| Black | 3 | 3.1 |
| Latinx | 9 | 9.2 |
| Native American | 6 | 6.1 |
| Multiracial | 9 | 9.2 |
| White | 67 | 68.4 |
| Age at baseline (years) | ||
| 13–14 | 28 | 26.9 |
| 15–17 | 62 | 59.6 |
| 18–20 | 14 | 13.5 |
| Caregiver annual income | ||
| <$25,000 | 11 | 12.8 |
| $25,000–$50,000 | 19 | 22.1 |
| $50,000–$100,000 | 17 | 19.8 |
| >$100,000 | 32 | 37.2 |
| Missing | 7 | 8.1 |
| Insurance type | ||
| Private | 59 | 56.7 |
| Medicaid | 34 | 32.7 |
| Military | 3 | 2.9 |
| No insurance | 8 | 7.7 |
| Tension with caregivers about gender | ||
| Yes | 36 | 34.6 |
| No | 68 | 65.4 |
| Driving distance from home from clinic (miles) | ||
| <15 | 27 | 26.0 |
| 15–25 | 24 | 23.1 |
| 25–50 | 21 | 20.2 |
| 50–100 | 11 | 10.6 |
| >100 | 17 | 16.3 |
| Missing | 4 | 3.8 |
| Urban/rural designation of home zip code | ||
| Metropolitan, population >1 million | 77 | 74.0 |
| Metropolitan, population <1 million | 18 | 17.3 |
| Nonmetropolitan urban, population <20,000 | 6 | 5.8 |
| Completely rural or population <2,500 | 3 | 2.9 |
| Timing of mental health assessment | ||
| Completed before first appointment | 30 | 28.8 |
| Completed after first appointment | 39 | 37.5 |
| Not completed | 11 | 10.6 |
| Not applicable, age 18 years or older | 19 | 18.3 |
| Missing | 5 | 4.8 |
| Pharmacological interventions received during study follow-up | ||
| Puberty blockers | 19 | 18.3 |
| Gender-affirming hormones | 64 | 61.5 |
Sixty-nine (77%) youth aged 13–17 years at baseline (n=90) completed the MHA during the study period, 30 youth before and 39 youth after their first appointment. Approximately half youth completed this MHA with a provider housed in SCGC, whereas the other half completed this assessment with a community mental health provider. Eleven minor youth had not completed the MHA at the time of study completion, 5 youth turned 18 by the date they were prescribed GAHs and were not required to complete the MHA, and data were missing for the remaining 5 youth.
The majority of participants (n=84, 81%) completed the 6-month follow-up survey, among whom 65 also completed the 12-month survey. Complete data on the dates of care timepoints were available for 90 (87%) participants: 11 were missing the date of first contacting the clinic and 8 were missing the date of completing a phone intake.
The median time from (i) contacting the clinic to completing a phone intake was 21 days (range, 0–445 days), (ii) from phone intake to first medical appointment was 83 days (range, 10–414 days), and (iii) from first medical appointment to initiating PBs/GAHs was 84 days (range, 0–370 days; Fig. 1). Overall, the median time (iv) from contacting the clinic to receiving PBs/GAHs was 307 days (range, 54–807 days). Kaplan–Meier curves are given in Supplementary Figure S1. The time to each care time point for patient subpopulations are given in Table 2.
Table 2.
Time to Receiving Gender-Affirming Care Estimated from Stratified Kaplan–Meier Curves Among Transgender and Nonbinary Youth Aged 13–20 Years Seeking Care at Seattle Children's Hospital Gender Clinic, 2017–2018
| Characteristics | N | Time from contacting clinic to completing phone intake |
Time from completing intake to first medical appointment |
Time from first medical appointment to receiving PBs/GAHs |
|||||
|---|---|---|---|---|---|---|---|---|---|
| Median (IQR), days | Log-rank p-value | Median (IQR), days | Log-rank p-value | Received PBs/GAHs, n (%) | χ2 p-value | Median (IQR), days | Log-rank p-value | ||
| Overall | 100 | 21 (13–38) | 83 (66–110) | 71 (71.0) | 84 (14–NA) | ||||
| Gender and sex assigned at birth | |||||||||
| Transmasculine or nonbinary AFAB | 68 | 22 (17–41) | 0.400 | 83 (74–106) | 0.800 | 50 (73.5) | 0.564 | 80 (3–NA) | 0.200 |
| Transfeminine or nonbinary AMAB | 32 | 17 (12–31) | 69 (41–113) | 21 (65.6) | 85 (23–NA) | ||||
| Race/ethnicity | |||||||||
| White | 65 | 20 (13–30) | 0.400 | 83 (64–106) | 0.400 | 47 (72.3) | 0.750 | 84 (14–NA) | 0.600 |
| Asian, Black, Latinx, or Native American | 30 | 25 (16–39) | 86 (65–160) | 20 (66.7) | 85 (14–NA) | ||||
| Age (years) | |||||||||
| 13–14 | 26 | 17 (12–20) | 0.001 | 63 (46–76) | <0.001 | 17 (65.4) | 0.455 | 58 (21–NA) | 0.900 |
| 15–17 | 61 | 27 (18–48) | 88 (71–111) | 43 (70.5) | 84 (16–NA) | ||||
| 18–20 | 13 | 21 (10–26) | 126 (91–230) | 11 (85.6) | 77 (4–184) | ||||
| Caregiver income | |||||||||
| >$50,000 | 46 | 17 (12–26) | 0.060 | 74 (60–92) | <0.001 | 33 (71.7) | 0.987 | 80 (21–NA) | 0.500 |
| <$50,000 | 30 | 27 (19–57) | 89 (69–160) | 21 (70.8) | 77 (0–NA) | ||||
| Insurance type | |||||||||
| Private | 58 | 18 (13–28) | 0.010 | 76 (60–95) | 0.300 | 43 (76.7) | 0.205 | 83 (14–182) | 0.600 |
| Medicaid | 34 | 27 (20–74) | 90 (73–148) | 20 (58.8) | 203 (16–NA) | ||||
| No insurance | 7 | 25 (12–108) | 106 (76–281) | 5 (71.4) | 16 (0–NA) | ||||
| Tension with caregivers about gender | |||||||||
| No | 64 | 19 (12–28) | 0.050 | 76 (62–106) | 0.200 | 44 (68.8) | 0.666 | 83 (4–NA) | 1.000 |
| Yes | 36 | 26 (16–60) | 92 (72–141) | 27 (75.0) | 84 (16–183) | ||||
| Driving distance from home to clinic (miles) | |||||||||
| <25 | 51 | 21 (13–30) | 0.300 | 76 (54–105) | 0.200 | 34 (66.7) | 0.981 | 80 (16–NA) | 0.900 |
| >25 | 49 | 21 (17–44) | 90 (74–129) | 37 (75.5) | 85 (14–185) | ||||
| Timing of mental health assessment | |||||||||
| Before first appointment | 30 | 27 (90.0) | <0.001 | 28 (0–80) | 0.008 | ||||
| After first appointment | 39 | 27 (69.2) | 155 (23–NA) | ||||||
| Not completed | 11 | 0 (0.0) | NA | ||||||
| Not applicable, age 18+ | 19 | 16 (84.2) | 93 (4–182) | ||||||
This table is restricted to 100 youth with data on the dates of care timepoints. Median and IQR times to care were estimated from stratified Kaplan–Meier curves, and p-values were estimated using the log-rank test. Bolded numbers indicate statistically significant differences based on an alpha of 0.05. For the third outcome (i.e., time from first medical appointment to receiving PBs/GAHs) the upper limit of the IQR is NA if 75% of youth did not achieve the outcome by the end of the study follow-up period.
AFAB, assigned female at birth; AMAB, assigned male at birth; GAH, gender-affirming hormone; IQR, interquartile range; NA, not applicable; PB, puberty blocker.
For the first care time point, univariate Cox regression (Table 3) revealed multiple factors that were independently associated with longer times from contacting the clinic to completing the phone intake: tension with caregivers (HR=0.64, 95% confidence interval [CI], 0.42–0.99), caregiver income <$50,000 (HR=0.56, 95% CI, 0.34–0.92), and having Medicaid insurance (HR=0.50, 95% CI, 0.31–0.80) were all associated with delays in completing the phone intake. Older participants aged 15–17 years experienced longer times from contacting the clinic to completing the phone intake (HR=0.39, 95% CI, 0.23–0.65) relative to 13- to 14-year-old participants. In the multivariate model, the magnitude and direction of the association remained the same for Medicaid insurance (adjusted hazard ratio [aHR]=0.31, 95% CI, 0.14–0.68), and age (15- to 17-year-olds, aHR=0.32, 95% CI, 0.17–0.60). When we restricted our analysis to minors age 13–17 years (Supplementary Table S1), the association with tension with caregivers had a larger effect size and remained statistically significant in the multivariate model (aHR=0.58, 95% CI, 0.34–0.99).
Table 3.
Cox Regression of Factors Associated with Time to Receiving Gender-Affirming Care Among Transgender and Nonbinary Youth Aged 13–20 Years Seeking Care at Seattle Children's Hospital Gender Clinic, 2017–2018
| Characteristics | Time from contacting clinic to completing phone intake |
Time from completing intake to first medical appointment |
Time from first medical appointment to receiving PBs/GAHs |
|||
|---|---|---|---|---|---|---|
| Univariate, HR (95% CI) | Multivariate, aHR (95% CI) | Univariate, HR (95% CI) | Multivariate, aHR (95% CI) | Univariate, HR (95% CI) | Multivariate, aHR (95% CI) | |
| Gender and sex assigned at birth | ||||||
| Transmasculine or nonbinary AFAB | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| Transfeminine or nonbinary AMAB | 1.22 (0.78–1.91) | 1.08 (0.65–1.81) | 1.05 (0.68–1.63) | 1.24 (0.75–2.07) | 0.67 (0.37–1.21) | 0.55 (0.28–1.11) |
| Race/ethnicity | ||||||
| White | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| Asian, Black, Latinx, or Native American | 0.84 (0.53–1.33) | 0.83 (0.49–1.39) | 0.82 (0.52–1.28) | 0.80 (0.50–1.29) | 1.14 (0.63–2.06) | 1.12 (0.58–2.15) |
| Age (years) | ||||||
| 13–14 | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| 15–17 | 0.39 (0.23–0.65) | 0.32 (0.17–0.60) | 0.37 (0.23–0.60) | 0.49 (0.29–0.85) | 1.10 (0.59–2.08) | 1.04 (0.49–2.21) |
| 18–20 | 0.55 (0.26–1.13) | 0.86 (0.24–3.01) | 0.22 (0.10–0.45) | 0.12 (0.04–0.40) | 0.96 (0.37–2.53) | 2.43 (0.35–16.91) |
| Caregiver income | ||||||
| >$50,000 | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| <$50,000 | 0.56 (0.34–0.92) | 1.52 (0.71–3.27) | 0.40 (0.24–0.68) | 0.42 (0.21–0.82) | 0.95 (0.52–1.73) | 1.02 (0.40–2.59) |
| Insurance type | ||||||
| Private | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| Medicaid | 0.50 (0.31–0.80) | 0.31 (0.14–0.68) | 0.71 (0.45–1.11) | 1.20 (0.69–2.09) | 0.74 (0.41–1.34) | 0.79 (0.35–1.78) |
| No insurance | 0.54 (0.24–1.21) | 1.09 (0.28–4.30) | 0.57 (0.26–1.25) | 0.90 (0.22–3.63) | 1.42 (0.50–4.03) | 6.20 (0.57–67.28) |
| Tension with caregivers about gender | ||||||
| No | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| Yes | 0.64 (0.42–0.99) | 0.69 (0.43–1.11) | 0.74 (0.49–1.13) | 1.06 (0.65–1.72) | 0.99 (0.58–1.70) | 0.93 (0.47–1.84) |
| Driving distance from home to clinic (miles) | ||||||
| <25 | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| >25 | 0.79 (0.52–1.20) | 1.32 (0.79–2.21) | 0.76 (0.51–1.14) | 0.88 (0.56–1.40) | 0.96 (0.57–1.62) | 1.04 (0.56–1.92) |
| Timing of mental health assessment | ||||||
| Before first appointment | Ref. | Ref. | ||||
| After first appointment | 0.62 (0.34–1.12) | 0.44 (0.22–0.88) | ||||
| Not applicable, age 18+ | 0.72 (0.35–1.52) | 0.34 (0.10–1.14) | ||||
Bolded numbers indicate statistically significant estimates with 95% CI that do not contain 1.0.
aHR, adjusted hazard ratio; CI, confidence interval; HR, hazard ratio.
For the second care time point, caregiver income <$50,000 was associated with longer times from completing the phone intake to first medical appointment in both univariate (HR=0.40, 95% CI, 0.24–0.68) and multivariate (aHR=0.42, 95% CI, 0.21–0.82) models. Older participants age 15–17 years (aHR=0.49, 95% CI, 0.29–0.85) and 18–20 years (aHR=0.12, 95% CI, 0.21–0.82) also experienced longer times from phone intake to first medical appointment relative to 13- to 14-year-olds in both models.
For the third care time point, no variables were significantly associated with the time from the first medical appointment to initiating PBs/GAHs in univariate models. After adjusting for covariates, the multivariate model suggest that youth who did not complete the MHA before their first medical appointment experienced longer times to initiating PBs/GAHs (aHR=0.44, 95% CI, 0.22–0.88). When we restricted our analysis to minors age 13–17 years, this association was statistically significant in both univariate and multivariate models (Supplementary Table S1). This corresponded with a lower proportion of youth who initiated PBs/GAHs by the end of the study follow-up period (69% vs. 90%, p<0.001) and longer median wait times (155 vs. 28 days, p=0.008) for youth who completed the MHA after their first medical appointment compared with youth who completed the MHA before their first medical appointment (Table 2).
Discussion
This study is the first of its kind to explore whether sociostructural or clinic-level factors influence TNB youth's time to accessing care and receiving gender-affirming medications. Investigation into the factors that contribute to delays in accessing care are particularly important given recent data suggesting youth who present to care after age 15 are more likely to experience depression, self-harm, and suicidal ideation and attempts than those who present to care less than age 15 years.13 TNB youth in our study waited a median of 10 months from their initial contact with the clinic to receive gender-affirming medications, and the time to accessing these medications varied widely, from just <2 months to >2 years.
Our findings suggest that certain subsets of TNB youth disproportionately experience delays in receiving gender-affirming medications, and that these barriers differed by stage of care engagement. Lower caregiver income, Medicaid insurance, and lack of family support were the primary factors associated with longer times to a first medical appointment. After youth made contact with the clinic, the only factor associated with delays in initiating gender-affirming medications was the timing of MHAs for youth younger than 18 years of age.
Caregiver income had an impact on completion of both phone intake and first medical visit. Although the phone intake was not a billed service at the time of this study, insurance type also played a role in how quickly TNB youth completed a phone intake. It is possible the families were unaware that the phone intake would not be a billed service, or were concerned about paying for future visits. These findings highlight the need to investigate ways gender care providers can develop clinical infrastructure and systems that better meet the needs of low-income TNB youth and their families.
Another subset of TNB youth, those who report tension with their families about their gender, were more likely to experience delays in establishing care with our clinic. Youths' ability to safely disclose their transgender identity to parents has been closely linked with how long they waited to access gender-affirming medical interventions, suggesting that parental acceptance is an important facilitator of timely access to care.29 In addition, given youth with limited parental support are more likely to experience depressive symptoms than their peers,30 this group of TNB youth and their families could likely benefit from additional supportive services, such as peer-support programming for caregivers of TNB youth31 or connecting families to existing local and national family support resources.
Youth who had not completed a MHA before their first medical appointment waited approximately twice as long to initiate GAHs/PBs compared with youth who completed an assessment before their first medical appointment. Despite the robust evidence suggesting mental health care is vital to improving depression, anxiety, and suicidality among adolescents,32–35 there remains considerable barriers to accessing these services. A recent systematic review found that the primary barriers to accessing mental health care for TNB adults include cost/affordability, fear of gatekeeping, or being pathologized, and mental health providers who are unknowledgeable, unsupportive, and unnuanced.36 We hypothesize that these structural barriers are likely exacerbated for TNB adolescents given the pool of gender-affirming pediatric mental health providers is notably smaller. Future research exploring the barriers youth face to receiving mental health services, and the impact this has on youth and families is critically important.
Although current pediatric guidelines strongly recommend conducting MHAs with adolescents before initiating PBs/GAHs, there are limited data on how mandated assessments contribute to delays in gender-affirming medical interventions25; thus, some clinics have begun to omit this requirement. At the time of our writing, WPATH had released a draft of the updated standard of care guidelines version 8 for public comment. Although these new guidelines still recommend bio-psychosocial assessment for adolescents before initiating medical interventions, they include new language acknowledging that diagnostic “classification may give access to care, but pathologizing transgender identity may be experienced as stigmatizing” and that “assessments related to gender health have been criticized.” Encouragingly, these guidelines also state that the “lack of available [mental health professionals] should not preclude a young person from accessing needed care in a timely manner.”
Given what we know about the importance of timely access to gender-affirming care,13 emerging empirical evidence that TNB youth aged 14 years and older are capable of providing informed consent for GAHs,37 and the history of psychiatric assessments as gatekeeping tools,26,36 there is a need to determine the necessity of mandated MHAs for adolescents before initiating PBs/GAHs. Particularly given the degree to which they may delay care, additional investigation is needed to better understand how required MHAs impact patient management and health outcomes.
Finally, age had a significant influence in how quickly TNB youth were able to access care. We suspect this may be related to the fact that youth aged 13–14 years are more likely to present to care before the completion of puberty as the sex they were assigned at birth. This may contribute to a heightened sense of urgency on the part of patients and their families to access PBs before the completion of puberty, because even short delays in care for prepubertal youth could result in unwanted secondary sex characteristic development and in some cases a need for future surgical intervention.38
In addition, societal discourses about childhood—which often talk about adolescents as in transition from childhood to adulthood—may influence provider attitudes about younger versus older age youth they see for care. For example, qualitative studies suggest that preadolescent youth who present for care may be viewed as innocent and in need of rescue,39 whereas adolescents, particularly those experiencing mental health symptoms, may be pathologized and required to undergo further assessment before the initiation of GAHs.40,41
These data should be interpreted within the context of the following limitations. First, this prospective study involved a group of youth currently accessing care in one large, multidisciplinary, pediatric gender clinic. Our cohort also lacks racial/ethnicity and gender diversity as it included mainly White and transmasculine youth. Therefore these data do not allow us to draw conclusions about youth who experience barriers to completing the intake process and were not retained in care. Driving distance to the clinic was not associated with longer times to receiving care in our sample. We hypothesize that this is likely a result of sampling bias, because patients who are able to spend a full day traveling to and from clinic appointments are more likely to have supportive caregivers and access to financial resources.
In addition, there were likely several unmeasured clinic-level and structural barriers that may impact wait times experienced by patients after their first medical appointment. These include waitlists for follow-up appointments owing to an insufficient number of providers for the patient care need (which has been addressed in subsequent years), frequent insurance denials for PBs/GAHs that involved a 1- to 4-week appeal process, and youth's caregivers not being ready to provide consent for their child to initiate PBs/GAHs, or whether youth accessed fertility preservation services before receiving gender-affirming medications. However, because uptake of fertility preservation services by TNB youth is exceedingly rare42,43 and are likely to be cost prohibitive for low-income families because they are infrequently covered by insurance, we suspect that this was unlikely to significantly impact our findings.
Conclusion
These study findings suggest that low income, Medicaid insurance, lack of family support, timing of MHAs, and youth age were associated with delays in receiving gender-affirming medications. In light of the growing evidence that expedient gender-affirming care improves mental health outcomes for TNB youth,10,11,13,44 it is important to understand the sociostructural and clinic-level factors that delay or produce inequitable access to gender-affirming care.
Supplementary Material
Abbreviations Used
- AFAB
assigned female at birth
- aHR
adjusted hazard ratio
- AMAB
assigned male at birth
- CI
confidence interval
- GAH
gender-affirming hormone
- HR
hazard ratio
- IQR
interquartile range
- MHA
mental health assessment
- PB
puberty blocker
- SCGC
Seattle Children's Hospital Gender Clinic
- TNB
transgender and nonbinary
- WPATH
World Professional Association for Transgender Health
Authors' Contributions
Conceptualization: K.A., D.I.-B., D.M.T., A.G.S. Investigation: K.A., D.I.-B., L.H., A.K. Data curation: F.W., K.A. Formal analysis and writing of initial draft: D.M.T., G.M.S. Supervision: K.A., D.I.-B. All authors reviewed, edited and approved of the final version of the article.
Author Disclosure Statement
D.M.T. receives support unrelated to this work from National Institutes of Health National Institute of Allergy and Infectious Diseases (Grant No. F31AI152542). The authors have no conflicts of interest to report.
Funding Information
This work was funded by Seattle Children's Center for Diversity and Health Equity and the Pacific Hospital Preservation Development Authority.
Supplementary Material
Cite this article as: Tordoff DM, Sequeira GM, Shook AG, Williams F, Hayden L, Kasenic A, Inwards-Breland D, Ahrens K (2023) Factors associated with time to receiving gender-affirming hormones and puberty blockers at a pediatric clinic serving transgender and nonbinary youth, Transgender Health 8:5, 420–428, DOI: 10.1089/trgh.2021.0116.
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