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Primary Care Considerations for Transgender and Gender-Diverse Youth

2020; American Academy of Pediatrics; Volume: 41; Issue: 9 Linguagem: Inglês

10.1542/pir.2018-0194

1529-7233

Jason Rafferty, Abigail A. Donaldson, Michelle Forcier,

Ethics and Legal Issues in Pediatric Healthcare

Pediatric primary care providers must recognize that developmentally appropriate, gender-affirming approaches to the care of transgender and gender-diverse youth are necessary to reduce comorbidities, including high rates of suicide.After completing this article, readers should be able to:Pediatric primary care providers (PPCPs) establish care with patients at birth and manage individuals throughout childhood, adolescence, and young adulthood. Thus, pediatricians are uniquely situated to screen, identify, and care for transgender and gender-diverse (TGD) youth. Large, systematic prevalence studies of TGD identity in children have not been conducted. (1) A 2016 national survey estimated that 0.6% of adults in the United States identify as transgender. This is approximately 1.5 million people and is twice the prevalence found a decade earlier. (2) Estimates suggest that today's adolescents identify as transgender more often than adults. (1)As children and adolescents become increasingly aware of gender diversity, PPCPs should be attentive to physical and emotional cues that point to gender-related distress. Early identification of potential distress, supported exploration of identity, and affirmation foster healthy growth and development in a particularly vulnerable population. It also leads to positive long-term health outcomes, including decreased morbidity and mortality. (3)(4) Although the American Academy of Pediatrics recommends that TGD adolescents be supported and affirmed in their gender, (5)(6) most PPCPs still lack confidence and sufficient knowledge to provide care for TGD individuals. (7) Pediatric providers should orient themselves to this important emerging area of pediatric practice and take steps toward use of a gender-affirming, developmentally appropriate framework that can improve early identification and positive health interventions for a historically vulnerable population. (6) This article provides a general overview of assessment and management planning for TGD youth in the primary care setting.Alex is a 6-year-old, identified as a female at birth, who presents to the primary care clinic for a health supervision visit. The medical record notes: "Mom reports that Alex has mostly boys as friends, has an interest in activities that are traditionally male, and sometimes wears brother's clothes." At this 6-year visit the PPCP explains that most children explore a range of gender expressions and identities as they develop. Several years later, at the 10-year health supervision visit, Alex has entered puberty, and Alex's mother reports discussing expected body changes at home. During the review of anticipatory guidance, the PPCP focuses on future pubertal changes. Throughout this conversation, Alex grimaces and hides behind a baseball cap. In response to this, the PPCP asks about Alex's feelings related to pubertal development, including changes in body, emotions, and social roles. Before Alex can respond, mom interjects that Alex never wants to talk about it and "wants to ignore puberty altogether."Society's understanding and appreciation of the broad gender diversity that exists has evolved over time and across countries and cultures. Increasing numbers of persons—and youth in particular—are exploring gender, with all its varied identities and aspirations. Historically, TGD individuals have been discriminated against, marginalized, and denied appropriate medical care. With increased awareness and acceptance, TGD youth today are increasingly looking to their PPCP to help support, guide, and manage their gender care. (8) To effectively discuss gender concerns, PPCPs should be familiar with the appropriate (and evolving) vocabulary of gender care.Gender is a defining and fundamental aspect of an individual's identity. It encompasses the inner sense of being male, female, a combination of both, or somewhere in between (gender identity) and the external way a person presents themselves to (gender expression) and is interpreted by (gender perception) the world. A person's assigned gender refers to the gender assignment made at birth, based on biological sex, including anatomy, genetics, and hormones. If a person's asserted gender identity aligns with their biological sex, they are considered cisgender. However, other people insist that their gender behaviors, appearance, and/or identity do not align with what is socially expected of their assigned gender. As this incongruence persists and is felt consistently over time, some gender-diverse individuals may label themselves with the broad umbrella term transgender. Traditionally, the medical community has associated a transgender identity with the terms insistent, persistent, and consistent, but many suggest that gender is more complex. More specific labels continue to evolve to capture the complexities of gender identity that people experience; for example, gender fluid means that one's gender may shift over time or in different circumstances, nonbinary means that one recognizes their gender to be something other than male or female, and agender means that one feels gender is a foreign concept to their identity. (9) Table 1 and the Figure provide an overview of these terms.Significant discomfort, or gender dysphoria, may develop in a TGD individual due to the incongruence between gender identity and assigned gender. It can also result when one's gender identity does not align with socially prescribed roles and expectations based on the person's assigned biological sex at birth. (10) Gender dysphoria is highly associated with depression, self-harm, suicidality, and eating disorders. (11)Gender-affirmative care focuses on developmentally appropriate, gender-inclusive management. It acknowledges an individual's unique gender experience within their developmental trajectory and accommodates understanding of gender diversity alongside gender questions and concerns. (12) A gender-affirmative care model naturally builds upon the family-centered, strengths-based focus of primary care pediatrics to foster open communication, empathy, and resiliency—all factors that are critical to supporting all children and adolescents in their journey to adulthood. (13)Sexual orientation refers to a person's identity in relation to the gender(s) to which they are sexually and romantically attracted. As understanding of gender continues to evolve, so do the options and labels for sexual orientation. However, being gender diverse does not imply anything about who someone is attracted to, and providers need to be careful not to make assumptions. (6)Gender identity is expressed in a developmental process that begins in early childhood. Past studies suggest that infants and toddlers present rudimentary forms of gender understanding, even before gender-differentiating behaviors are observed. For example, infants as young as 3 to 4 months of age distinguish between male and female categories of faces, and by 6 to 8 months discriminate male and female voices. (14)By 24 to 31 months, toddlers engage in verbal gender labeling and show gender-type toy awareness. (14) Some TGD children articulate an awareness of feeling "different" starting as early as preschool. By ages 3 to 5 years, gender is a highly salient influence on preferences related to play, peer groups, and clothing. TGD preschoolers typically demonstrate preferences, behaviors, and belief measures consistent with peers of their asserted gender. (15)By 5 to 6 years old children develop gender consistency (understanding that gender is stable from infancy to adulthood) and stability (understanding that it does not change with fluctuation in role or appearance). This reinforces same-gender stereotyped play preferences and friend groups. (14)(15) Childhood play involving toys or roles that go against gender stereotypes is a normative experience in early school-age children: all children experiment with different dress, makeup, toys, activities, and make-believe roles. Often the externally imposed environment drives children toward stereotyped preferences (ie, peer exclusion and parental expectations). (16)(17) For TGD youth, such pressures drive their preference "underground," or force them to suppress their genuine sense of self, which over time leads to low self-esteem, shame, and depression. (3)The onset of puberty—particularly the emergence of physical features that affect how one's gender is perceived (eg, development of breasts and menses or male pattern hair and masculine habitus)—can be distressing for many adolescents, especially if such physical changes are at odds with one's gender identity. TGD adolescents often present with a sense of urgency and heightened distress as they undergo these permanent physical changes at odds with their inner experience of gender and self. TGD adolescents are at particularly high risk for social withdrawal, self-injurious behaviors, and restrictive eating disorders. (10)(11)(18)(19) Many may not directly present with gender concerns but instead their distress will manifest as declining academic progress or high-risk behaviors, such as substance use. (10) Adolescence is also a time of heightened attention to relationships, sexuality, and romantic partnership, adding complexity to the task of gender identity articulation and assertion. Menses, erections, orgasms, masturbation, and peer pressure to have sex can be overwhelming and extremely distressing for TGD youth. (20)Traditionally, gender development has been understood as a linear trajectory, but emerging research conceptualizes it as an ongoing process that is revisited and reevaluated throughout the life span. (21)(22) It can also interact with other aspects of identity development, such as realizing one's sexual orientation. Although developing a gender identity and a sexual orientation are distinct processes, they are not experienced in parallel. Rather, they can overlap, intersect, and complicate each other. Exploring one's sexual orientation may expand one's exposure to gender diversity, raising questions about their own gender identity, and evolving gender identities perpetually challenge the understanding of one's sexual and romantic attractions. (21)Table 2 provides some developmentally appropriate questions for patients and parents that may help PPCPs explore gender and identify gender dysphoria in children and adolescents.There is no way to predict which subset of gender-questioning or nonconforming children and adolescents will identify as transgender adults. (18)(23) TGD youth report an awareness of difference in their gender experience at an average age of 8.5 years but delay communicating or disclosing until an average of 10 years later. (8) Throughout development, TGD youth tend to describe their identity as consistent, persistent, and insistent despite various challenges and pressures to suppress it. (12)(24) Understanding that a clear concept of gender identity can take time to develop for many children and adolescents, PPCPs should inquire at all annual visits (and whenever concerns arise) to support patients and families in early identification of gender dysphoria. As children enter preadolescence, PPCPs should consider establishing some time alone with the patient during the annual health supervision visit to assess gender and other concerns the patient may have in private. Some parents may not be comfortable with this separation; however, early identification allows for timely mobilization of necessary emotional and social supports, treatment planning, and increased engagement in care. Early identification of gender dysphoria can also help establish a treatment plan well in advance of puberty to increase the likelihood that the youth's ongoing development will be congruent with their asserted gender identity. (6)PPCPs can model nonjudgmental communication and understanding for TGD youth and their families by actively listening to a child's personal gender narrative. The PPCP serves a critical role as a trusted adult who can acknowledge and normalize any questions, concerns, or hesitation regarding gender identity development. A gender-affirmative approach centers on unconditional safety, respect, and empathy in eliciting the gender narrative. (13)(25)(26)(27) Table 1 can help guide PPCP inquiry about gender and gender identity.Confidentiality is a consideration for all adolescents but may be particularly important to TGD youth. Establishing some time alone between the adolescent and the PPCP is standard practice for adolescent care; PPCPs should review confidentiality with adolescent patients and their parents at regular intervals to support this practice. Adolescents may be reluctant to reveal their gender questioning and/or diverse identity to family members and may feel unsafe to do so. Understanding that the clinic setting is a safe place to explore and discuss gender identity in confidence may help the adolescent feel more comfortable exploring these questions and concerns with the PPCP. (28)Thoughtful psychosocial history-taking and assessment are key components of any adolescent or young adult examination; however, for TGD youth this assessment is critical to understanding the complexity of each individual, including comorbid concerns. The HEEADSSSS psychosocial interview is a standard assessment tool for adolescent psychosocial wellness that can help guide a gender interview in an open and supportive manner. HEEADSSSS is an acronym for the domains that can be assessed: Home, Education/Employment, Eating, Activities, Drugs, Sexuality, Safety, Suicide, Strengths (Table 3). Using open-ended, nonjudgmental questions can facilitate a more honest conversation with the adolescent patient. For example, asking adolescents how they feel about their gender, in general, and allowing them to define the labels they use may yield more information than just asking if they identify as male or female based on the provider's assumptions of what those specific labels mean.PPCPs who have established relationships with TGD youth and their parents are in an ideal position to assess home, school, and work environments and to build on sources of support while assessing for potential sources of rejection, abuse, or safety concerns. Within the psychosocial assessment there are several areas of concern for TGD youth. For example, many TGD youth experience feelings of "otherness" and isolation, so it is essential to ask whether they feel safe disclosing their identity to friends, family, and/or other supportive adults. This should be followed by inquiring about the reasons why they do or do not feel safe disclosing their gender identity in these settings to better assess safety and support and to promote healthy adolescent development. (6)(11)(18)(24)(28)Transgender people experience disproportionately high rates of interpersonal violence of all types, by both strangers and people they know (family, romantic partners). Research has shown that most TGD people will experience violence in their lifetimes. This risk starts at an early age through bullying and intimate partner/dating violence, and it persists throughout the life span. (29)(30)(31) Likewise, 40% of transgender people have attempted suicide in their lifetime, which is 9 times the rate among all people in the United States. (30) Therefore, safety assessments should be conducted frequently, including specific inquiry about exposure to violence, bullying, and thoughts of self-harm or suicide.Body dissatisfaction is common among TGD youth, and individuals may experiment with weight or exercise manipulation to suppress development or achieve a physical appearance that is more consistent with their asserted gender. Emerging evidence suggests that TGD individuals are more likely to engage in disordered eating behavior compared with cisgender peers. (11)(19)(32)(33) Therefore, PPCPs should be alert to changes in nutrition and exercise habits and should screen for disordered eating behavior. Weights should be obtained at all visits and trends followed over time to help identify more secretive behaviors. Body dissatisfaction in TGD youth can co-occur with depression, victimization, and substance use or experimentation. (8)(10)(11)(28) Providers should, therefore, screen for drug, alcohol, and tobacco use alongside other psychosocial risks.For all sexually active adolescents and young adults it is important to take a thorough sexual history. For the TGD patient, this should include inquiring about—and using—the labels that they might use for their genitalia to make the discussion more comfortable and avoid triggering dysphoria. (34) It is critical to ask about sexual behavior to assess risk; for example, asking specifically about oral, anal, and genital sex in addition to any instrumentation will help inform counseling, safety recommendations, and screening.In terms of pregnancy prevention, hormonal and surgical methods of contraception should be reviewed with all TGD youth, including those who are taking gender-affirming hormones, because these hormones do not adequately prevent unplanned pregnancies. (34)(35) Hormonal contraception methods may not be well tolerated and may trigger dysphoria, particularly if it leads to menstruation, vaginal bleeding, or cramping (eg, with the use of a cyclic oral contraceptive pill in a TGD youth with female anatomy that identifies as male). The specific hormone present may also lead to concerns or issues with compliance (eg, use of an estrogen-containing method in a TGD youth that identifies as male). Careful review of options, adverse effects, and expected menstrual patterns will help maximize satisfaction with care. For PPCPs who are not comfortable with contraceptive management options, partnership with a TGD-informed gynecologist or adolescent medicine specialist can facilitate timely access to care.It is important to provide anticipatory guidance around methods of reducing sexually transmitted infections. External and internal condoms and dental dams should be discussed as barrier protection against sexually transmitted infection and pregnancy. In sexually active youth, laboratory and point-of-care testing for sexually transmitted infections, including gonorrhea, chlamydia, trichomonas, human immunodeficiency virus, and syphilis, should be conducted regularly based on individual risk factors. (36)(37) Depending on the sexual practices of the patient, PPCPs should have a low threshold for additional screening tests (eg, herpes simplex virus, hepatitis A/B/C) (37)(38) and to start preexposure prophylaxis for human immunodeficiency virus prevention. (39)Regardless of a TGD youth's affirmed gender, routine preventive screening examinations and tests (36) are conducted based on the patient's anatomy and biological sex. (10)(35) This should be carefully discussed and planned ahead of time with the youth and their family because accommodations may be necessary. For example, a TGD young adult who has a uterus would need gynecological care, including routine cervical cancer screening. Sedation for the procedure may be necessary to avoid emotional distress and reproductive anatomy dysphoria.In addition to striving for a nonjudgmental, gender-affirming interpersonal approach to care, the pediatric clinical environment itself can send an important message to patients and families attuned to gender concerns. PPCPs can promote a sense of safety and inclusion by visibly posting a rainbow flag, pink triangle, or other gender-inclusive symbol; identifying unisex bathrooms; exhibiting posters and brochures about TGD health concerns; and posting a public statement of nondiscrimination, including noncisgender options on registration forms and other materials (not just male or female) (40)(41)Quality improvement initiatives and diversity training that addresses the unique needs of TGD youth and their families should be offered to all clinical and administrative staff. The patient-asserted name and pronouns should be used by staff and reflected in the medical record (prominently or confidentially) with the consent of the TGD youth. Some limitations may be imposed by factors such as safety concerns, billing systems, and the medical record system; staff should be sensitive to these limitations and discuss them proactively with the TGD patient. (41)Careful consideration should be given when sensitive aspects of the physical examination are necessary because they can be very anxiety provoking for TGD youth. For example, some individuals may be uncomfortable changing into a gown or undergoing Tanner staging, breast examinations, or genitourinary examinations. Letting patients know what to expect in the examination ahead of time, and asking permission to proceed, can allow individuals the opportunity to express discomfort and give PPCPs the chance to inquire and address these concerns directly with the patient. If the patient declines any part of the examination, PPCPs should be comfortable deferring to a future date. Patients may appreciate an explanation of why the examination is important, and what to expect at the future visit. In some cases, patients or families may be able to articulate measures that can be taken to decrease anxiety and improve the experience in the future. (42)Management considerations range widely for TGD youth, and there is no single prescribed "path" or sequence of steps to gender affirmation. Rather, treatment planning depends on the specific indications and gender aspirations of the individual, the readiness of the individual and the parents to undertake a care plan, and the individual's developmental/pubertal stage.PPCPs need to have some understanding of—if not expertise in—treatment options for gender dysphoria. At a minimum, PPCPs should be able to facilitate a basic discussion of management options and timely referral to other providers with expertise in this area if they are not comfortable or able to deliver comprehensive care themselves. National and state laws, as well as institutional policies, often dictate or direct care that can be provided to children and adolescents, including considerations regarding confidentiality and consent. PPCPs should be aware of these laws and policies. (6)Various protocols are available to guide gender-affirmative care, including specific dosing recommendations for medications that can be administered in a primary or subspecialty care setting; most treatment plans are based on the World Professional Organization for Transgender Health Standards of Care (43) and the Endocrine Society guidelines. (44) This section briefly outlines several key management considerations relevant to the primary care setting. Importantly, no medication or other treatments are currently approved by the Food and Drug Administration (FDA) for the purposes of gender alteration and affirmation. There is ongoing research on the efficacy and safety of these medications, and this review article is not meant to encompass all aspects of medication use, controversies, or potential adverse effects; these can be found elsewhere. (44) Table 4 provides some general considerations that PPCPs should be familiar with as they counsel a TGD youth on potential next steps in gender management.For many TGD children, pubertal onset in particular is accompanied by intense anxiety and distress. Gonadotropin-releasing hormone (GnRH) analogs are safe, reversible medications that pause pubertal development, thereby relieving the distress of pubertal development in an adolescent who is experiencing gender dysphoria. The medication can be initiated when patients reach Tanner stage 2 or at any subsequent point throughout puberty. The use of GnRH analogs allows the TGD adolescent and the family time to explore gender identity, access psychosocial supports, further refine treatment goals, and establish a longer-term treatment plan. Ultimately this intervention can prevent undesired, irreversible physical development and can allow avoidance of surgery that would otherwise be needed to revise such undesired development. (45)(46) Although GnRH analogs used in this manner lead to improved mental health outcomes, (47) the research on long-term risks is limited. (46) For many pediatric patients, use of GnRH analogs is the first step toward medical management of gender dysphoria.There are multiple factors that contribute to gender affirmation:It is important to counsel all TGD youth and parents considering medical and surgical gender affirmation on the potential issues related to sexual function, fertility, and family planning. Gender-affirming hormones may impair erectile function and stop menses but do not necessarily prevent unintended pregnancy. (54) In addition, the effect of sustained GnRH analogs and gender-affirming hormones on fertility remains unknown (35); patients who start GnRH analogs early in puberty and transition directly to hormone therapy may experience a reduction or elimination of fertility. (44) Hormonal and surgical methods of contraception should be reviewed with all TGD youth, (34)(35) with careful consideration for menstrual pattern or absence depending on the method selected. TGD youth should be counseled about family planning and should be offered fertility preservation options early in treatment. (35)(55)(56) TGD individuals have options for achieving their desired family but report encountering many barriers to becoming a parent. (55) As reproductive technologies continue to evolve, it is likely that fertility preservation options for TGD individuals will expand (57); PPCPs should identify gynecologic and urologic collaborators in their region to support provision of all options.A youth's disclosure of his or her TGD identity, or "coming out," should occur when the patient deems to be ready, with appropriate support, and after consideration of any possible safety issues (ie, risk of interpersonal violence, homelessness, etc). Information related to gender and sexuality is considered confidential, as long as there is no apparent risk of harm, and it is never appropriate for a provider to openly disclose or "out" a patient's TGD status. (5)(28) The PPCP can act as a trusted adult for children and adolescents who are unsure of how to approach disclosure to family and friends. PPCPs can facilitate these important conversations with family, put supports in place, and brainstorm or provide safety plans for patients preparing to disclose their gender identity.The treatment for gender dysphoria is affirmation, understanding, and support to prevent internalization and isolation. Multiple studies indicate that family acceptance of a TGD youth is critical to their short- and long-term well-being, with improved health outcomes well into adulthood. (58) Yet families often struggle to understand and accept their child's TGD identity because of their deep-set beliefs, fears, response to social pressure, and biases. (25) It is important to note that "acceptance" refers to the ability to recognize the youth's struggle and to provide unconditional love. There may be concerns, questions, and disagreements on the part of the parent and/or the youth that need to be acknowledged; this does not necessarily constitute rejection but is part of the process of acceptance and accommodation over time. (25)(59) A primary role of the PPCP is to facilitate these conversations and advocate for the TGD youth in making sure that dialogue occurs without causing harm.Adolescents spend much of their time at school, and this environment may be particularly uncomfortable for TGD adolescents. TGD youth report missing school due to feeling unsafe and/or being denied bathroom access and report being discouraged from participation in extracurricular activities. (31) They report increased experiences of verbal harassment, physical assault, and sexual abuse at school. (30) In a national study, only 6% of TGD youth said that their schools had policies to protect them based on gender identity. (31) In light of this, PPCPs can help adolescents and parents identify and access supportive adults in the school and can partner with schools to create a safe environment for TGD youth (eg, through support of antibullying policies and accommodations that affirm a child's asserted gender, such as use of asserted name and preferred bathroom use).From a public health perspective, TGD individuals, compared with their cisgender peers, experience substantially higher lifelong rates of anxiety, depression, self-harm and suicidality, substance use, eating disorders, victimization, homelessness, and incarceration. (8)(10)(11)(19)(28)(30)(48)(60) Minority stress theory postulates that both explicit and implicit biases foster prejudice and discrimination against stigmatized minoritized groups, which, when combined with low social support and resources, leads to a physiologic stress response. When stress persists, it leads to anxiety, depression, and poor mental and physical health sequelae. (61) The experience of stigma and exclusion from a TGD identity can intersect with race, ethnicity, socioeconomic status, migrant status, and other marginalized identities to compound the experience of stress and sense of being different than others. (61)(62) This model may explain some of the extreme health disparities faced specifically by transgender women of color. (62) Leaders and policymakers need to understand the barriers faced by minoritized populations to promote population health through decisions that promote awareness and equity while reducing disparities in resources and opportunities. PPCPs can play an integral role in advocacy toward such change.Our understanding of gender identity, including the medical and emotional needs of TGD youth and their families, is continually evolving. As our cultural understanding gains momentum, it can be challenging for PPCPs to keep up with new/changing terms, treatment options, and best practices. Historically, gaps in knowledge and training present unnecessary barriers to care for TGD individuals, particularly among children and adolescents. PPCPs have the potential to play an essential role in early identification and affirmation of gender-diverse youth. In delivering appropriate screening, anticipatory guidance, and supportive care to children and adolescents as they explore concepts of gender, sexuality, and gender identity, PPCPs can use the familiar pediatric framework of growth and development to support gender exploration and authentic gender assertion as a normative experience. This fosters early access to mental health, family support, and ongoing gender-affirming care that, ultimately, reduces the risk of gender dysphoria, isolation, and shame that many TGD youth unfortunately face. PPCPs can be strong allies for TGD patients and their families in the clinic, community, and beyond, providing the promise of both a medical home and a future that celebrates people for being true to themselves.Because Alex is uncomfortable talking about puberty, the PPCP affirms that puberty can be a sensitive topic for all children but that it is a critical period of physical, emotional, and cognitive change. The PPCP says, "Sometimes these changes may not feel right, and may make children scared or uncomfortable." Assurance is given to Alex that the clinic is a "safe space" where one can ask questions, raise concerns, or talk about anything that feels uncomfortable. The PPCP asks, "Do you have any questions or problems about your body?" Alex answers, "Kids at school sometimes tease me and say I am a boy, and sometimes I do feel more like a boy." Mom states, "Shouldn't Alex know her gender by now?" The PPCP responds, "Gender is complicated. While we often think kids have it figured out at a younger age, we now know that is not always the case. I am really glad we are talking about this because your mom and I are here to support you." Alex smiles as Mom states, "No matter what the gender, you are still Alex to me and I love Alex no matter what."