To describe the patients with gender identity disorder referred to a pediatric medical center. We identify changes in patients after creation of the multidisciplinary Gender Management Service by expanding the Disorders of Sex Development clinic to include transgender patients.
Data gathered on 97 consecutive patients <21 years, with initial visits between January 1998 and February 2010, who fulfilled the following criteria: long-standing cross-gender behaviors, provided letters from current mental health professional, and parental support. Main descriptive measures included gender, age, Tanner stage, history of gender identity development, and psychiatric comorbidity.
Genotypic male:female ratio was 43:54 (0.8:1); there was a slight preponderance of female patients but not significant from 1:1. Age of presentation was 14.8 ± 3.4 years (mean ± SD) without sex difference (P = .11). Tanner stage at presentation was 4.1 ± 1.4 for genotypic female patients and 3.6 ± 1.5 for genotypic male patients (P = .02). Age at start of medical treatment was 15.6 ± 2.8 years. Forty-three patients (44.3%) presented with significant psychiatric history, including 20 reporting self-mutilation (20.6%) and suicide attempts (9.3%).
After establishment of a multidisciplinary gender clinic, the gender identity disorder population increased fourfold. Complex clinical presentations required additional mental health support as the patient population grew. Mean age and Tanner Stage were too advanced for pubertal suppressive therapy to be an affordable option for most patients. Two-thirds of patients were started on cross-sex hormone therapy. Greater awareness of the benefit of early medical intervention is needed. Psychological and physical effects of pubertal suppression and/or cross-sex hormones in our patients require further investigation.
Comments
Promoting the Health of Gender-variant Children and Adolescents
Re: Children and Adolescents With Gender Identity Disorder Referred to a Pediatric Medical Center
As the language surrounding the diagnosis and care of gender-variant children and youth evolves, so do the ethical issues surrounding their care. Previous guidelines for the care of transgender people introduced the concept of gender transitioning which focused primarily on adapting the natal physical body characteristics to that of the desired gender through hormonal medications and sex-reassignment surgeries. Many pediatricians and other health providers, as well as transgender people, still commonly refer to this part of their gender identity development and expression as "transitioning." However, the concept of gender identity affirmation, inclusive of gender-variant children and adolescents, is emerging as a new paradigm in transgender care (1).
Currently, the American Academy of Pediatrics does not have a specific position statement regarding the care of gender-variant children and adolescents. Pediatricians and health providers for children are left in the difficult position of assessing and evaluating these youth with few evidence-based resources and little clinical guidance. Spack et al's research has cast light on the prevalence of serious psychiatric conditions including self-mutilation and suicide among gender-variant and transgender youth. While these findings are disturbing, they are not surprising. (2) Too often in the Lesbian, Gay, Bisexual and Transgender (LGBT) lay media are reports of violence and injury directed at gender- variant people. And although population-based studies on suicide have not identified transgender participants, numerous non-random surveys show high rates of suicidal behavior in that population, with 41% of adult respondents to the 2009 National Transgender Discrimination Survey reporting lifetime suicide attempts (3).
Though our experience caring for gender-variant youth has been more limited, our clinical observations echo similar findings from Dr. Spack's research. The PRIDE Clinic at MetroHealth Medical Center was developed in 2007 to meet the needs of LGBT patients, their friends and family in the Greater Cleveland Area. Our health service provides primary care, mental health services and specialty services in a dedicated LGBT space within a hospital system. Though our health service line was not designed with the care needs of gender non-conforming children in mind, as this need arose we felt the need to adapt and address those patients' health concerns. We developed a multidisciplinary team with an internist/pediatrician, a pediatric psychologist and a pediatric endocrinologist to assess gender variance and begin care services.
In our patient population, we have 66 self identified transgender patients, five of whom are under age 18 years. The average age at time of presentation was 10.2 years with a male:female predominance of 1.5:1. All of our gender non-conforming youth had adapted at least one major aspect of their social life to align with their desired gender including changing their name and appearance, relocating into a new school, and disclosing their gender identity and expression to friends, family and the greater community.
Our experience highlights some additional challenges in the care of gender-variant children to which Dr. Spack has alluded. Our patients presented at a younger age in preadolescence and experienced various degrees of success and difficulty in being accepted in their families, schools and communities. One recurring theme in our clinical encounters with gender-variant youth and their families was that of social isolation. Both youth and their families felt detrimental effects of disclosure and discussed how challenging it is to find social support networks and establish friendships. Most of our youth were fortunate to have parents and family members who generally demonstrated acceptance and support of their children's gender variant expression. Ryan et al has highlighted the risk for poor health outcomes for lesbian, gay and bisexual youth when they do not receive messages of support and acceptance (4). Likely this finding applies to gender-variant children and transgender youth as well.
Dr. Spack's findings should serve as a call to action for AAP in promoting the health of gender-variant children and adolescents. By developing a position statement and best practices to guide pediatricians and those who see them in the clinical setting, the AAP can demonstrate its dedication to the health of all children. The ideal position statement should be evidence-based and would address the many social and ethical issues surrounding the care of gender-variant youth. Health organizations such as the World Professional Association for Transgender Health (WPATH), the Gay Lesbian Medical Association (GLMA) and others may serve as resources in crafting recommendations of care with the patient's best interests in mind (5). But until such care guidelines are created, we as pediatricians have the responsibility to ensure the proper evaluation, referral and support of gender-variant children and their families, being mindful of the medical, psychological and social factors of their care.
Henry Ng, MD, MPH Internal Medicine/Pediatrics Assistant Professor, Case Western Reserve University School of Medicine Clinical Director, PRIDE Clinic President-Elect, GLMA
References:
1. World Professional Association for Transgender Health, Standards of Care, Version 7. http://www.wpath.org/documents/Standards%20of%20Care%20V7%20- %202011%20WPATH.pdf. Accessed 2/27/12.
2. Spack NP, Edwards-Leeper L, Feldman HA, Leibowitz S, Mandel F, Diamond DA, Vance SR. \Children and Adolescents With Gender Identity Disorder Referred to a Pediatric Medical Center. Pediatrics 2011; published ahead of print February 20, 2012, doi:10.1542/peds.2011-0907
3. Grant JM, Mottet LA, Tanis J, Harrison J, Herman JL, Keisling M. Injustice at every turn: a report of the National Transgender Discrimination Survey. Washington, DC: National Center for Transgender Equality and National Gay and Lesbian Task Force; 2011.
4. Ryan C, Huebner D, Diaz RM, Sanchez J. Family Rejection as a Predictor of Negative Health Outcomes in White and Latino Lesbian, Gay, and Bisexual Young Adults. Pediatrics 2009; 123; 346-352
5. Gay Lesbian Medical Association. http//www.glma.org. Accessed 2/27/12.
Conflict of Interest:
I am the current President-elect of the Gay Lesbian Medical Association.