Developmental Approaches to Caring for & Gender Diverse Pediatric & Adolescent Patients

Michelle Forcier MD MPH Professor Pediatrics, Alpert School of Medicine Brown University, Providence RI Here is What a Standard Slide Looks Like . With bulleted text . And sub bullets

2 Objectives

. Discuss human development w gender perspective . Discuss how patient centered, developmental paradigms to gender might reduce bias and stigma that create disparities and lead to risks . Provide initial strategies for appropriate and competent care . Understand the role of providers in promoting culture changes that respect diversity

3 DisclosuresDISCLOSURES

• Consultant Planned Parenthood • Royalties Up To Date

• All medications off label • I am an optimist Why Talk About Gender with Kids?

. Professional responsibility . AMA, AAMC, AAFP, AAP, SAHM, APA . Recommend training on LGBTQIA health . Exclusion of coverage illegal in some states . Lack of formal medical training no longer “good excuse”

. Pediatric responsibility . Anticipatory guidance & prevention . Future planning . Models & promotes diversity, equity for all children

Reproductive Justice under the Social Justice Umbrella 5 CDC Behavioral Risk Factor Surveillance System (BRFSS) 2016 National estimate transgender persons . 0.6% =1.4 million . Range 0.3% ND to 0.8% HI . Highest 18-24 versus older adults

This survey does not include < 18 youth

6 Sexual Orientation and of Middle School Students

Transgender Gender Identity 1.3%

Non_Hetero Sexual Orientation 15.9%

Shields JP, et al. “Estimating population size and demographic characteristic of LGBT youth in 7 middle schools.” J Adol Hlth. 2013:248-50. Perpective: Gender Care is Primary Care

Patient Centered Listen to our patients

Consent Based Address patient identified needs, concerns, goals

Primary Care 100% of patients experience gender!!

8 Reproductive Justice Framework: Intersectionality of Our Children’s Health Care Rights

1. Bodily autonomy 2. Right to self determine 3. Right for safe, healthy environment with opportunity to develop potential 4. Responsibility for most marginalized

Especially fitting for children & adolescents SisterSong 1997 … Developmental Paradigm Gender, sexuality are universal, normalized Variance is expected aspect of biology & human Patient- development centered Diversity not = deviance but celebrated Consent-based

Developmental care Meet patient goals (nothing to “diagnose” or “treat”) Address, reduce minority stress

Advocate, empower ALL children Model, elevate cultural expectations 10 11 Awareness of Gender Identity

Between ages 1 and 2 Conscious of physical differences between sexes

~ 3 years old Can label themselves as a girl or boy

By age 4 Gender identity relatively stable, recognize gender constant

12 All pre-pubertal children play with gender expression & roles

 Passing interest or trying out gender-typical behaviors Gender Play  Interests related to other/opposite sex  Few days, weeks, months, years

Behaviors and expression may be nonconforming, but children can still feel they are in right-gendered body 13 Gender Diversity

Persistent Diverse Consistent Fluid Insistent Nonconforming

Cross gender expression, Agender role playing Non binary  Wanting other gender Refuses to ascribe to body/parts typical masculine or  Not liking one’s gender & feminine assignments body () Can change, shift

14 Are we doing our part? Missed Opportunities for Screening & Identification 2 Contemporary Pediatric Studies AlexanderWhere SC et al. JAMA Pediatr. 2014 is gender???Henry-Reid Pediatrics 2010;125:e741-747. How Often do Pediatricians Ask About Sexual Orientation During Adolescent Well Visits?

. Time spent talking about sexuality

. 35% spent ZERO time . 30% spent 1-35 seconds . 35% spent more than 36 seconds Increasing Evidence

1. Early identification has known benefits >> potential risks

2. Parent & family acceptance offer critical protective factors  Short & long term healthier outcomes

3. Child health professionals can improve early support & improve resources

17 Who & When to “Screen”?

. All children! . Developmental stages . Opportunity for improving child/family communication & support

. Diverse or nonconforming gender expression

. Concerns/problems with . Mood . Behavior . Social

18 Ask! Parent(s) Ask! Patient • Child play, hair, dress • Do you feel more preferences like a girl, boy, neither, both? • Concerns with these • How would you like • Concerns with to play, cut your behavior, friends, hair, dress? getting along at school, school • What name or failure, bullying, pronoun (he for boy, anger, sadness, she for girl) fits you? isolation, other? • What does it mean to be girl, boy, both,

neither? 19 Gender Screening “Tools”

20 Images taken from The Gender Book, are publically available on the book’s website, www.thegenderbook.com Gender & sexual development are natural parts of Remind Youth human development & Parents Gender & sexual expression vary …

What Gender & sexual diversity are different than risk Is ?? “Healthy” Open, honest communication is critical to healthy decision-making, behaviors, support, and access to care

22 Historical Approaches to TGD Children

Gender identity stable No treatment until 18 Initiate with (after full pubertal experience) congruent with gender identity GCS Living in Asserted Gender

Allow some experience puberty, to Gender identity stable age 15-16 or Tanner 4, then start Start GnRH analogues at Tanner 2 GnRH analogues or hormones Initiate hormones several years later

https://ceitraining.org/ 23 Seminal Puberty Blocker Work : Early Intervention Delemarre-van de Waal, Cohen Kettenis (2006)

Early blocking of puberty followed by cross gender replacement At follow-up, all 54 patients were satisfied with their pubertal development ▫ No patients decided to stop GnRH agonist therapy ▫ All patients eligible decided to take cross gender hormones ▫ There were no adverse events from GnRH agonists

No suicides No street hormones

Reconfirmed over time…. OlsonKR 2016, deVries AL 2014, Steensma TD 2013, deVries AL 2012, Spack NP 2012, deVries AL 2011, Steensma TD 2011, Steensma TD 2013, Malpas J 2011, Teurk CM 2012, Bussey K 2011, DeVries 2010, Wallien MS 2008, Drummon 2008, Zucker 2005, Green 1987, Davenport24 1986 Ryan CJ; 2010, 2009 N=245 LGBT Retrospective assess family accepting behaviors in response to gender & sexual minority status

Predicts improved Protects against . Self esteem Depression . Social support Substance use . General health status Suicidality 25 NIH Patient Reported Outcome TransYouth Project Measurement Information System Large-scale (>150 children) longitudinal study transgender children, 25 states Significantly lower than TGD children in previous studies (2016) 73 children, ages 3-12 (2017) 116 trans, 122 controls, 72 sibs  Symptoms of depression, anxiety ages 6-14  Rates depression (50.1) and anxiety (54.2)   Symptoms of depression, self worth No higher than 2 control groups same  Siblings & cis age- and gender-matched children  Slightly higher anxiety

Olson KR, Durwood L, DeMeules M, et al. Mental Health of Transgender Dunwood L, McLaughlin KA, Oslon KR. Mental Health and Self-Worth in Children Who Are Supported in Their Identities. Pediatrics. Socially Transitioned . J Am Acad Child Adolesc Psych. 2016;137(3):e20153223 2017 Feb;56(2):116-123.

26 Minoritized person Suicide, Substance Use, SES Disadvantage, Stigma Victimization Minority Stress Theory Prejudice, Discrimination, Abuse, Anxiety, Lack of Acceptance, Depression Isolation, Esteem, Resources Minority Stress

Adapted from O’Hanlan, et al (1997). A review of the medical consequences 27 of homophobia with suggestions for resolution. JGLMA;1:25‐39.) Countering Minority Stress Early identification Social stigma Resources, connection, Minority support . Familial rejection stress Change cultural Social isolation appreciation for diversity Fear of physical attacks

Pro-diversity . Resiliency Improved Health Outcomes Identity congruent with Mental health anatomy/physiology Social Puberty in gender identified. Medical living safely in identified gender Financial Educational 28 Talking with all children about their gender Supporting authentic development to improve quality of life development

Children with gender diversity or questions • Establish early, strong social support • See when concerns identified, ideally BEFORE puberty • Gives providers time to engage with family and patient, build rapport & trust • Offer relief to patient worried about upcoming puberty 29 • Facilitate emotional, social, physical state that more closely represents individual’s sense of self • Experience single puberty congruent with internal identities • Prevent unwanted &/or permanent secondary gender/sex characteristics • Reduce need for future medical, surgical interventions • Reduce depression, anxiety, risk-taking facilitates mental health supports

Consider “blocking” puberty • Effects fully reversible • “Buys time” for parents to learn more & adjust • “Buys time” for patient & prevent unwanted secondary physical changes • Sends message of hope

30 Starting Gender Affirming Medical Care Puberty Blockers

Timing Assess needs & goals identity & “phenotype” 1. Is the youth ready? . Physical (Tanner stage) 2. Is the parent(s) ready? . Psychological . Social 3. Tanner stage 4. 2nd gender characteristics Patient-centered consent process 5. Is age congruent w peers? . Review benefits, risks, common & uncommon side effects 6. What is current, predicted, . Stress reversible, completely desired adult height? . Review follow up, monitoring 7. Emotional benefits

31 32 Continuous GnRH secretion GnRH Agonists Suppress FSH, LH Initial ↑ LH, FSH followed by desensitized pituitary . Injectibles LH, FSH secretion suppressed

Leuprorelin (, ) . Monthly $500-1000 . 3-monthly depot $1500- 2000

. Long Acting Implant 24 + months

. $3500 (Vantas) 33 . $20 000 +(S li ) Benefits >> Risks . Puberty Blockers

Asserted Boys Asserted Girls

Avoid bigger, heavier skeletal changes No female Avoid adam’s apple Stop widening pelvis Avoid male pattern face, body hair Block menses dysphoria Still useful for some Tanner 4-5 w Delay early epiphyseal closure, add minimal external gender height characteristics Low dose T for promoting height  earlier for earlier puberty & height reduction

34 Blockers

Early puberty Middle Puberty

• Limited tissue for later gender • Won’t take away characteristics already affirming surgeries developed but can stop further • Sterility if GAH allowing for mature development & distress spermatogenesis or oogenesis • Very effective at suppresses menses • Mature gamete production occurs late in • Allows for lower E/T doses, slower puberty, associated with significant titration as no need to suppress secondary sex characteristics

35 Blockers Late Puberty & Beyond

• GnRH analog + estradiol or might allow for successful phenotypic changes with lower GAH doses • “…[In certain situations, such as above] continuation of GnRH analog treatment is advised until gonadectomy…”

Implications for genderqueer & nonbinary people

From the Endocrine Society 2017 Guidelines: 36 Progestins as Blockers Can be used an alternative to GnRH agonists • Payment Issues • Access Decreases GnRH pulse frequency • Patient or Parental Concerns • Antagonistic effect • Low frequency stimulates FSH synthesis • Increased frequency stimulates LH Synthesis • FSH stimulates follicular production of estradiol Not as effective . Menses suppression but not phenotype changes . Limited research in assigned males. • Concern for issues with bone metabolism and perimenopausal symptoms with chronic use.

Implications for genderqueer-nonbinary

37 38

Adolescents and Gender Setting Up the Initial Assessment

To do What not to do

. Establish privacy • Interview only with parent in room • All teens deserve private time . Ask parent to step out of room . Explain what can (and can’t) be kept • Assume confidential • Name or pronoun . Establish trust and rapport • Gender identity and expression correlate . Ask name and pronoun • Disclose without patient’s consent . Ask goals of visit . Getting to know the person • Dismiss • Parents as a source of support . General adolescent health assessment HEADDSSS • As a phase . Leading into more detailed & sensitive • Refer for reparative therapy history 39 Gender Experience . Engage parent(s) to support their child . Review history of gender experience . Explore parent’s concerns and priorities . Open-ended encouragement, . Assess parental support and knowledge “Tell me your story in your own words” . Facilitate discussion and negotiations . Ask about specific feelings, thoughts, behaviors, preferences . Parent may offer excellent insight into early . Establish expectations for all stakeholders childhood . Incorporate patient goals, with parental . Document prior efforts to adopt desired expectations, and management options gender . Clothing, makeup, play . Hormone use, if any . Review patient goals

40 Starting Gender Hormones Assess needs & goals around “phenotypic transition” . Physical (Tanner stage) Timing . Psychological . 1. Is the youth ready? Social 2. Is the parent(s) ready? Patient-centered consent process 3. Is age congruent w peers? . Review benefits, risks, common & uncommon 4. What is current, predicted, desired side effects adult height? . Differentiate reversible & irreversible physical changes . Determine if realistic sense of what can and can’t be impacted by hormones . Review follow up, monitoring

41 Estradiol Feminization

? Sublingual Intramuscular Transdermal Implants

Estradiol Agent 17 b estradiol Cypionate Patch Gel Valerate

5-20 mg IM 2-12 mg daily Route Q 1-2 weeks 0.1-0.4 mg + 1 gm + Sublingual Dosing 1-2 weekly 2-3 times daily 30 minutes Subcutaneous?

Routes 1. Meet Goals Dosing 2. Avoid Problems Planning 3. Physiologic Levels 42 Transdermal Transdermal Testosterone Implant gel patch Injectibles

Agent cypionate enanthate enanthate undecanoate crystals dissolved in gel pellet

Brand Depo- Delatestryl® Xyosted® Aveed® AndroGel® Androderm® Testopel® name Testosterone®

750 mg (3ml) 40-120 mg SQ every week IM ~12 pellets 50,75,100 mg 5-10 g daily (900mg) Dosing (0.5ml) Subdermal Initiation previously SQ weekly Q 3-6 months FU dose 4 wks 40-200 mg IM every 1-2 weeks Q 10 weeks

Routes 1. Meet Goals Dosing 2. Avoid Problems Planning 3. Physiologic Levels  Holistic, comprehensive  Diversity positive  Strength based resiliency ]  Non-judgmental harm reduction

 Patient centered, consent based care

44 Screening & Prevention According to What Parts Go Where & Risk http://www.cdc.gov/std/tg2015/specialpops TGDMasc • HPV vaccine & cervical cancer screening plans • Discuss, offer contraception • GC screen NAAT • Consider + • Trichomonas, Bacterial Vaginosis, HSV, HIV • Consider PreP, PEP Screening & Prevention According to What Parts Go Where & Risk http://www.cdc.gov/std/tg2015/specialpops TGDFem . Offer HPV vaccine . Test at least once per year . HIV, HCV, Syphilis serology . Urine, pharyngeal, rectal GC NAAT

. Consider PreP, PEP PrEP protocol 1. Initial visit: History, labs, STI screen Adherence assessment Consent 2. Q 3 months follow-up: re-assess: need, adherence Labs: HIV BMP Trans Students

. Student Survey 9th and 11th graders, n=81,885 . Trans/genderfluid/non-conforming n=2,168 (2.7%) . Risk behaviors significantly higher among trans than cis . Emotional distress, bullying significantly more common among birth-assigned females than males . Protective factors • Family connectedness • Student-teacher relationships • Feel safe in community

48 School & Other Settings

49 School & Other Settings

50 Images taken from The Gender Book, are publically available on the book’s website, www.thegenderbook.com Take-Home Points

. Screening for gender issues, like sexual health concerns, important through life span . Earlier parental support, along w early medical engagement, can be lifesaving, decrease risks, improve outcomes . Mental health & social support is important . General strength focused, harm reduction strategies continue, incorporating knowledge of minority stress impact Questions

53 MICHELLE FORCIER, MD, MPH

. Professor Pediatrics, Brown University School of Medicine, PVD, RI . [email protected] for phi . [email protected] for other

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