Gender-variant youth exhibit disproportionally high rates of depression, anxiety, substance abuse, self-harm, and suicidality. They often present seeking medical or mental health treatment for gender dysphoria, which manifests with particular severity as youth enter puberty. Clinical practice guidelines recommend that gender dysphoric youth in early stages of puberty receive medical treatment to suppress endogenous puberty and prevent the development of undesired secondary sex characteristics. These clinical guidelines reference recommendations by the World Professional Association for Transgender Health that youth satisfy eligibility and readiness criteria as determined by a mental health clinician prior to initiating pubertal suppression treatment. While eligibility criteria are clearly defined, readiness is not well operationalized. Indeed, youth are considered ready for pubertal suppression if they understand expected outcomes, benefits, and risks of treatment. However, there is no objective measure of readiness, and reliance is placed on subjective ?clinical expertise?. This lack of standardized assessment is an increasing problem as medical treatment for gender dypshoria is more commonly sought and pubertal suppression is more widely accepted as standard of care. The goal of the proposed study is to develop an assessment tool that can aid mental health clinicians in systematically assessing readiness for pubertal suppression from a decisional capacity framework.
Specific aims are to (Aim 1) develop a Pubertal Suppression Readiness Assessment Tool (PS-RAT) by following methods used to develop an existing vignette-based measure of decisional capacity, obtaining expert feedback on the tool, and assessing initial reliability and validity, and (Aim 2) explore how neurocognitive and emotional functioning are associated with decisional capacity as measured by the PS-RAT. Successful completion of this study will result in a prototype PS-RAT which will (1) assist clinicians in systematically and objectively assessing youth?s breadth and depth of understanding the potential risks and benefits of pubertal suppression treatment for gender dysphoria, (2) help to identify specific domains in which youth may need additional psychoeducation and/or therapeutic support to facilitate readiness to move forward with treatment, and (3) contribute to informed decision-making by youth and families.

Public Health Relevance

The Institute of Medicine?s 2011 report ?The Health of Lesbian, Gay, Bisexual, and Transgender (LGBT) People,? calls for the development of evidence-based and rigorous research aimed at improving quality of health care for gender-variant youth. Developing an assessment tool that can guide the systematic evaluation of readiness for pubertal suppression treatment is critical as pubertal suppression has become more widely accepted as standard of care for gender dysphoria among peripubertal youth.

Agency
National Institute of Health (NIH)
Institute
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Type
Exploratory/Developmental Grants (R21)
Project #
1R21HD087839-01A1
Application #
9243840
Study Section
Psychosocial Development, Risk and Prevention Study Section (PDRP)
Program Officer
Freund, Lisa S
Project Start
2017-01-23
Project End
2018-12-31
Budget Start
2017-01-23
Budget End
2017-12-31
Support Year
1
Fiscal Year
2017
Total Cost
$198,518
Indirect Cost
$66,173
Name
Children's Memorial Hospital (Chicago)
Department
Type
Independent Hospitals
DUNS #
074438755
City
Chicago
State
IL
Country
United States
Zip Code
60611
Chen, Diane; Edwards-Leeper, Laura; Stancin, Terry et al. (2018) Advancing the Practice of Pediatric Psychology with Transgender Youth: State of the Science, Ongoing Controversies, and Future Directions. Clin Pract Pediatr Psychol 6:73-83
Chen, Diane; Simons, Lisa (2018) Ethical Considerations in Fertility Preservation for Transgender Youth: A Case Illustration. Clin Pract Pediatr Psychol 6:93-100
Chen, Diane; Hidalgo, Marco A; Garofalo, Robert (2017) Parental Perceptions of Emotional and Behavioral Difficulties Among Prepubertal Gender-Nonconforming Children. Clin Pract Pediatr Psychol 5:342-352
Chen, Diane; Simons, Lisa; Johnson, Emilie K et al. (2017) Fertility Preservation for Transgender Adolescents. J Adolesc Health 61:120-123