Psychiatric Diagnoses and Comorbidities in a Diverse, Multicity Cohort of Young Transgender Women: Baseline Findings From Project LifeSkills

Importance  Transgender youth, including adolescent and young adult transgender women assigned a male sex at birth who identify as girls, women, transgender women, transfemale, male-to-female, or another diverse transfeminine gender identity, represent a vulnerable population at risk for negative mental health and substance use outcomes. Diagnostic clinical interviews to assess prevalence of mental health, substance dependence, and comorbid psychiatric disorders in young transgender women remain scarce.

Objective  To report the prevalence of mental health, substance dependence, and comorbid psychiatric disorders assessed via clinical diagnostic interview in a high-risk community-recruited sample of young transgender women.

Design, Setting, and Participants  Observational study reporting baseline finding from a diverse sample of 298 sexually active, young transgender women aged 16 through 29 years (mean age, 23.4 years; 49.0% black, 12.4% Latina, 25.5% white, and 13.1% other minority race/ethnicity) and enrolled in Project LifeSkills, an ongoing randomized controlled HIV prevention intervention efficacy trial in Chicago and Boston, between 2012 and 2015.

Exposure  Transfeminine gender identity.

Main Outcomes and Measures  Age- and site-adjusted prevalence and comorbidities of mental health and substance dependence disorders assessed via the Mini-International Neuropsychiatric Interview, including 1 or more diagnoses, 2 or more comorbid diagnoses, major depressive episode (current and lifetime), past 30-day suicidal risk (no/low risk vs moderate/high risk), past 6-month generalized anxiety disorder and posttraumatic stress disorder, and past 12-month alcohol dependence and nonalcohol psychoactive substance use dependence.

Results  Of the 298 transgender women, 41.5% of participants had 1 or more mental health or substance dependence diagnoses; 1 in 5 (20.1%) had 2 or more comorbid psychiatric diagnoses. Prevalence of specific disorders was as follows: lifetime and current major depressive episode, 35.4% and 14.7%, respectively; suicidality, 20.2%; generalized anxiety disorder, 7.9%; posttraumatic stress disorder, 9.8%; alcohol dependence, 11.2%; and nonalcohol psychoactive substance use dependence, 15.2%.

Conclusions and Relevance  Prevalence of psychiatric diagnoses was high in this community-recruited sample of young transgender women. Improving access to routine primary care, diagnostic screening, psychotherapy, and pharmacologic treatments, and retention in care in clinical community-based, pediatric, and adolescent medicine settings are urgently needed to address mental health and substance dependence disorders in this population. Further research will be critical, particularly longitudinal studies across development, to understand risk factors and identify optimal timing and targets for psychosocial interventions.

Mental health disorders and substance dependence affect 3.8% to 26.2% of the US population and frequently manifest in adolescence and young adulthood, with younger age groups bearing disproportionate burden relative to older groups.^1-3 Transgender youth—including adolescent and young adult transgender women assigned a male sex at birth who identify as girls, women, transgender women, transfemale, male-to-female, or another diverse gender identity on the transfeminine spectrum—represent a vulnerable population at risk for negative mental health^4-7 and substance use^8-11 outcomes in the United States.

Although community surveys of transgender persons in the United States have found a high prevalence of depression, anxiety, and substance use relative to that of the general adult US population,^{4,5,8-10,12-16} studies typically use screening instruments or subthreshold symptom questions and do not use diagnostic interviews, such as the Mini-International Neuropsychiatric Interview (MINI), to assess prevalence of mental health psychopathology and substance dependence, with one exception.¹⁷ A community sample of 571 adult transgender women¹⁷ recruited from the New York City metropolitan area (mean age 37 years) used the MINI and found that lifetime prevalence of depression was 54.3%, nearly 3 times higher than the corresponding National Comorbidity Survey estimate for the general population, 19.6%¹⁸; lifetime suicide ideation was 53.5% (more than 3 times higher than the corresponding National Comorbidity Survey estimate in the general population, 13.5%), and lifetime suicide plans and attempts (35.0% and 27.9%, respectively) were 7 to 10 times higher than corresponding National Comorbidity Survey estimates (3.9% and 4.6%, respectively). Substance dependence was not assessed via the MINI in that study. Psychiatric screening instruments assist in appraising the possible presence of a particular problem and identifying individuals who may need a more thorough evaluation, whereas a structured psychiatric diagnostic interview allows definition of the specific nature of the problem, determination of a clinical diagnosis (eg, epidemiologic “cases”), and development of specific treatment recommendations for addressing the clinical problem.^19-21 Diagnostic interview data focused on adolescent and young transgender women remain scarce and are important to establish guidelines for diagnosis and treatment for this youth group, given their complex life experiences.^2,22

The aim of this study was to report the prevalence of mental health, substance dependence, and comorbid psychiatric disorders assessed via a diagnostic interview in an at-risk community-recruited sample of young transgender women.

Box Section Ref ID

Between 2012 and 2015, 300 young transgender women were enrolled in Project LifeSkills, an ongoing multisite trial in Chicago, Illinois (51%), and Boston, Massachusetts (49%), testing the efficacy of a culturally tailored, empowerment-based, and group-delivered HIV prevention intervention aimed at reducing youths’ risk for HIV acquisition and transmission.²³ Participants were recruited with a variety of convenience sampling strategies, such as outreach to community-based organizations and events, as well as bars and clubs; study flyers on bulletin boards, websites, and listservs; social media outreach and advertisement (eg, Facebook, craigslist); word of mouth via peer recruiters and transgender community leaders; and tabling in the lobby of local health centers and social service organizations serving young transgender women. Grounded in community-based participatory research principles,²⁴ recruitment was conducted with input from local transgender communities in each city, as well as from study staff who were members of the study population (ie, young transgender women). Eligible participants were aged 16-29 years; were assigned a male sex at birth and now self-identify as a woman, female, transgender woman, transfemale, male-to-female, or other identity on the transfeminine spectrum; were English speaking; and self-reported participating in risky sexual activity. Current gender dysphoria was not an inclusion criterion for this study.

At baseline, the mean age of participants was 23.4 years (SD = 3.5 years; range, 16-29 years), and the sample was racially and ethnically diverse (49.0% black, 12.4% Latina, 25.5% white, and 13.1% other minority race/ethnicity). Differences by age and race or ethnicity were examined to identify subgroups of young transgender women at highest risk. The goal was to inform clinical care and future psychosocial interventions for young transgender women, including those delivered in pediatric, adolescent, and young adult medical care settings. Nearly three-quarters (74%) of the sample was unemployed, and nearly half (46%) reported an annual income of less than $10 000. More than one-quarter (28%) reported having no health insurance and 58% reported having public insurance. Although the majority reported ever using cross-sex hormones (72%), less than one-quarter (21%) of the sample reported undergoing gender-reassignment surgery or laser therapy.

Participants completed a 2-hour baseline study visit composed of standardized quantitative assessment via a combination of computer-assisted self-interviewing for sexual risk outcomes and other sensitive topics, and biologic testing for HIV and other sexually transmitted infections (urethral gonorrhea and chlamydia). All participants completed written informed consent for study participation. The institutional review boards at both participating study sites approved the study.

The MINI version 6 is a brief structured diagnostic interview that examines mental health disorders and substance dependence according to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision²⁵ and International Classification of Diseases, 10th Revision²⁶ diagnostic criteria.²⁷ The MINI is fully structured to allow administration by nonspecialized lay interviewers. It was not administered as part of the main aims of the LifeSkills intervention, but was included in the baseline study assessment visit with the explicit goal of estimating the prevalence and distribution of psychiatric diagnoses in this unique community-based sample of at-risk young transgender women. Interviewers were trained to complete the MINI by social and psychiatric epidemiologists with experience in the assessment of psychopathology in high-risk urban populations. To keep the assessment short, the MINI was designed to primarily focus on the indication of current disorders. For each disorder, 1 or 2 screening questions rule out the diagnosis when answered negatively. For the purpose of this study, participants were asked all diagnostic questions relating to the following disorders: major depressive episode (current and lifetime), past 30-day suicidality risk (no/low risk vs moderate/high risk), past 6-month generalized anxiety disorder and posttraumatic stress disorder, and past 12-month alcohol dependence and nonalcohol psychoactive substance use dependence. Diagnostic interview data were collected only on these 7 psychiatric diagnoses and did not include others (eg, panic disorder, obsessive-compulsive disorder, eating disorders) to minimize participant burden and fatigue in the current study. Each MINI module has been separately validated; thus, we would not expect that limiting to 7 diagnoses would affect reliability or validity of the diagnostic interview. Additionally, a count score was calculated according to the total number of current psychiatric disorders indicated.

SAS version 9.4 was used for statistical analyses. Prevalence estimates of psychiatric disorders were calculated for the total sample. Age-adjusted and age- and study site–adjusted prevalences were estimated by weighting the crude prevalence by the age and age or site distributions of the sample. Specifically, this was done by multiplying the prevalence in each age stratum by the proportion of individuals in each one and summing these stratum-specific rates.²⁸ Prevalence estimates by age (groupings: aged 16-19, 20-24, and 25-29 years) and race (ie, primary race/ethnicity identification; groupings: white, black, Latina, and other minority race/ethnicity) are also presented. χ² Tests were calculated to assess differences in psychiatric disorders across age and race strata (adjusting for study site). Complete-case analyses were conducted, with less than 4% missing data across all analyses. The final data analytic sample was n = 298.

Quiz Ref IDAlmost half the participants (41.5%) had 1 or more mental health or substance dependence diagnoses; 21.4% had 1 diagnosis; 20.1% had 2 or more (Table 1). Age- and site-adjusted prevalences were as follows: lifetime and current major depressive episode were 35.4% and 14.7%, respectively; past 30-day suicidality was 20.2%; past 6-month generalized anxiety disorder and posttraumatic stress disorder were 7.9% and 9.8%, respectively; and past 12-month alcohol dependence and nonalcohol psychoactive substance use were 11.2% and 15.2%, respectively (Table 1).

Statistically significant age group differences were found for lifetime major depressive episode (χ² = 13.0; P = .002), with highest prevalence in the age group 25-29 years (46.9%). Comparisons by age approached statistical significance for suicidality (χ² = 5.02; P = .08), with highest prevalence in the age group 25-29 years (23.7%). In addition, the absence of diagnoses was significantly different by age, with the youngest women having the highest prevalence (79.6%) and the oldest group the lowest (54.3%; χ² = 10.7; P = .005). Similarly, the mean number of diagnoses differed by age, with the same pattern of increasing comorbidity by age. Quiz Ref IDPrevalence of mental health diagnoses by race was statistically significant for lifetime and current major depressive episode (all P < .05), with highest prevalence in Latina young transgender women (48.6% and 27.0%, respectively) (Table 2). Comparisons by race approached statistical significance for suicidality and posttraumatic stress disorder.

Quiz Ref IDPrevalence of mental health, substance dependence, and comorbid psychiatric disorders was high in this at-risk community sample of young transgender women. The estimates found here are 1.7 to 3.6 times that of the general US population.^3,29,30 Differences in mental health disorders were also found by race, with Latina transgender women having the highest and black women the lowest prevalence of major depressive episode. Quiz Ref IDA lower proportion of our sample had lifetime major depressive episode (35.4%) compared with that in a study of adult transgender women (54.3%), suggesting an important opportunity for early prevention efforts.¹⁷ Indeed, in age-stratified estimates we found significant differences by age, with increasing depression prevalence with age. Similarly, current suicidality followed this same pattern, showing an increasing trend by age. Also, comorbidities were least prevalent in the youngest group and highest in the oldest one. These data are consistent with the general adolescent and young adult development literature,³¹ which suggest that stressors, such as adverse role transitions or identity development processes, are associated with both onset and persistence of psychiatric disorders.^32-34 For young transgender women, gender transition and gender affirmation represent unique stressors, both positive and negative, that may affect psychiatric health and well-being across adolescence and young adulthood.³⁵ Improving access to culturally competent primary care, diagnostic screening, psychotherapy, and pharmacologic treatments, and retention in care in clinical community-based, pediatric, and adolescent and young adult medicine settings are urgently needed to address the adverse mental health and substance dependence disorders in this population, with attention to differences by race or ethnicity.^36-38 Further research is needed, particularly longitudinal studies that examine the antecedents and health sequelae of mental health, substance dependence, and psychiatric comorbidities across adolescent and young adult development to identify optimal timing and targets for psychosocial interventions in relation to gender affirmation and gender role transitions.^39,40

Transgender people who have a sex assigned at birth that differs from their current gender identity represent approximately 0.5% of the US population⁴¹ and experience documented disparities in mental health and substance use outcomes,^{4,5,8-10,12-17} as supported by the high prevalence estimates in the current study using a brief structured diagnostic interview with young transgender women. The high prevalence of mental health and substance use outcomes among young transgender women is a serious public health problem and necessitates clinical consideration in primary care settings and gender-related treatment. Pediatric, adolescent, or young adult primary care providers may be a first resource for families needing education and support and play a critical role in supporting transgender youth, including screening for psychosocial problems and health risks, referring for gender-specific mental health and medical care, and providing advocacy and support.^36,42 Research suggests that medical intervention such as hormone therapy may reduce mental health distress in transgender youth.⁴³ The majority (72%) of our sample reported cross-sex hormones; however, a high prevalence of psychiatric diagnoses and comorbidities was still observed. Clinicians should familiarize themselves with current international guidelines for the provision of clinical care to transgender young people^37,44,45 to best meet both medical and mental health needs of this at-risk population.

Findings necessitate consideration alongside several limitations. First, this is an urban, community-recruited convenience sample that enrolled participants with sexually risky behavior in an HIV prevention efficacy trial; thus, results are not generalizable to the US general population of young transgender women. Because national survey approaches to quantify behavioral risks among adolescents and young adults in the United States, such as the Youth Risk Behavior Survey,⁴⁶ do not include indicators of transgender status, population-based routine mental health and substance use surveillance data are lacking for this population. Given the high prevalence of psychiatric diagnoses in this sample, inclusion of these indicators is warranted in routine health surveillance. Second, individuals from the target study population (ie, young transgender women) served as interviewers of the young transgender women sampled. Quiz Ref IDThus, social desirability bias may be pertinent; however, such bias would likely underestimate the prevalence estimates reported herein.

Limitations notwithstanding, the present study highlights the high prevalence of psychiatric disorders, including substance use dependence, in this community sample of at-risk sexually active young transgender women. Although US mental health services are slowly becoming more transgender inclusive, substance use treatment programs tailored to meet the needs of transgender individuals, particularly young transgender women, remain scarce.⁴⁷ Culturally tailored interventions that work to decrease mental health distress and substance use among young transgender women are needed, as are longitudinal cohort studies that examine the course of mental and physical health of young transgender women over time across adolescence and young adulthood to inform interventions for this at-risk group of youth.⁴⁸ Such studies will increase understanding of the prevalence, course, and trajectory of psychiatric comorbidities across development and gather information that is currently unknown, such as characterizing patterns of homotypic (continuity of the same disorder) or heterotypic (continuity from one diagnosis to another)⁴⁹ diagnoses among young transgender women.

Correction: The related CME Quiz was corrected online July 5, 2016, to fix an error in the correct answer for question 3.

Corresponding Author: Sari L. Reisner, ScD, Division of General Pediatrics, Boston Children’s Hospital/Harvard Medical School, 300 Longwood Ave, Mailstop BCH 3201, Office #223, Boston, MA 02115 (sari.reisner@childrens.harvard.edu).

Published Online: March 21, 2016. doi:10.1001/jamapediatrics.2016.0067.

Author Contributions: Drs Reisner and Biello had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Study concept and design: Reisner, White Hughto, Kuhns, Garofalo, Mimiaga.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Reisner, Biello, White Hughto.

Critical revision of the manuscript for important intellectual content: All authors.

Administrative, technical, or material support: All authors.

Conflict of Interest Disclosures: None reported.

Funding/Support: Research reported in this publication was supported by the National Institute of Mental Health (NIMH) of the National Institutes of Health under award R01MH094323 (Drs Garofalo and Mimiaga). Ms White Hughto is supported by awards T32MH020031 and P30MH062294 from NIMH.

Role of the Funder/Sponsor: The funders acknowledged herein had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Disclaimer: The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Additional Contributions: We thank the Project LifeSkills Teams in Chicago and Boston and our participants for sharing their experiences.