Primary and Preventative Care for Transgender Patients




Introduction


Primary care clinicians can learn the skills to provide high-quality, affirming medical care to transgender patients the same way they learn to care for other patients with specific health needs. Clinicians may choose to provide the full spectrum of transition-related medical care, including hormonal therapy and pubertal blockers, or offer only primary care services. Regardless of scope, competency in care for transgender people is essential in our changing world. This skill set requires knowledge about barriers to care, steps for creating a trans-affirming office environment, cultural competency, medical treatment options for transition-related care, and an understanding for how medical transitions impact routine primary care. Most primary care providers are trained within a biopsychosocial framework—meaning that one’s health is considered in the context of mind, body, family, work, and culture. This holistic approach is particularly well suited for transgender patients, who may have complex medical and social concerns. In this chapter, we will review basic competencies and strategies for incorporating transgender health into primary care practice.




Barriers to Care


Transgender and gender nonconforming people face relentless discrimination in employment, family life, education, housing, and public accommodation, but some of the most appalling discrimination occurs when these individuals reach out for help—in health-care settings. Transgender people have well-defined health needs but, for many reasons, are often unable to access appropriate medical care. A recent survey of 27,715 transgender people across the United States shows minimal gains in access to health care for transgender people compared with data from 2010. Twenty-five percent of those surveyed experienced a problem in the last year regarding their insurance, 33% who saw a health-care provider reported at least one negative experience related to being transgender, 55% of those who sought coverage for transition-related surgery were denied, and 23% of respondents did not see a doctor when they needed to because of fear of maltreatment. Provider-based barriers to care include lack of training or experience with transgender health issues, paucity of evidence-based data to guide therapy, personal discomfort, religious or cultural prohibitions, ethical concerns, fear of complications, fear of litigation, and reluctance to prescribe medications for off-label indications. Patient-based barriers include stigma, lack of adequate insurance coverage, coming-out issues (e.g. fear of violence, rejection, ambivalence), financial problems, mistrust of the medical establishment, absence of knowledgeable providers, and inability to present for sustained monitoring and follow up due to lifestyle issues.


The lack of quality epidemiologic studies creates a significant barrier to care. Uncounted, the size of the transgender population remains unknown, and we are unable to inform public policy or allocate resources. Lesbian, gay, bisexual and transgender (LGBT) people are referred to as a hidden minority, as sexual orientation and gender identity are not readily apparent and patients may be reluctant to reveal themselves to clinicians. Thirty-one percent of transgender people are not out to any of their health-care providers. Most existing epidemiologic studies are flawed by conflicting definitions of what it means to be transgender and only those who seek treatment at gender clinics are accounted for in these studies. One population-based survey reported a 0.5% rate of individuals who self-identified as transgender, indicating a relatively high prevalence. Conway estimates that 0.5% to 2% of the general population have feelings of being transgender and 0.1% to 0.5% have taken steps to transition. As societal norms have changed, gender clinics across the country are reporting increased numbers of patients requesting services, but the ability to find primary care services remains low. Transgender people will remain underserved unless proper epidemiologic studies define the scope of the population.


Intrapersonal and interpersonal stigma presents another barrier to care for transgender people. The concept of minority stress is used to describe the health effects of stigmatization. Makadon outlines the causes of minority stress as “(a) an external, objective traumatic event, such as being assaulted or fired from a job; (b) the expectation of rejection and development of vigilance in interactions with others; (c) the internalization of negative societal attitudes; and (d) the concealment of gender identity or sexual orientation out of shame or guilt or to protect oneself from harm.” The concept of intersectionality demonstrates how individuals hold multiple identities, defined in terms of relative sociocultural power and privilege, which shape their experience with stigma. Differences in power and privilege associated with these identities ensure that an unemployed transgender woman of color will have a different experience attempting to access health care than a wealthy, white, transgender man.


Stigma has a direct effect on health. In one study, sexual minorities who lived in communities with high levels of anti-gay prejudice had a higher hazard of morbidity, an 18-year difference in the average age of completed suicide, and a 12-year shorter life expectancy. Transgender patients have increased rates of substance abuse, psychiatric illness, unemployment, HIV infection, and homelessness, which adds stigma to this population and increases the difficulty of accessing or sustaining medical care. Training in cultural competency, while essential, fails to address the larger health-care disparities created by institutionalized sources of stigma which result from cultural, economic, and political conditions.


Traditionally, LGBT health issues receive scant attention in medical training programs. In a survey of 176 medical schools, students received an average of 5 hours of LGBT health training over 4 years. Most medical students receive minimal training on taking a sexual history, leaving them uneasy and unprepared to handle the diversity of human sexual experience. When trainings on LGBT health topics are offered, medical students agree they are relevant to their future work as physicians. Unless the next generation of clinicians receives focused training on the specific health needs, transgender patients will continue to have difficulty accessing clinically and culturally competent care. The resulting “informational and institutional erasure” will lead to ongoing alienation and distrust of medical systems, with a devastating effect on health.


The paucity of evidence-based treatment guidelines, studies on the long-term safety of gender-affirming hormone therapy (GAHT), and guidance for complex medical cases also leads to barriers to care. Few studies exist to define the long-term risks of treatment with GAHT. LGBT people have been explicitly excluded from some clinical trials, particularly those related to sexual function. Pathologists and laboratory professionals lack guidelines on how to interpret surgical and cytologic specimens from transgender people, and norms for lab data are based on binary gender definitions. Use of GAHT or pubertal blocking medications for the treatment of gender dysphoria is not FDA approved, which may make clinicians reluctant to prescribe, or fearful of litigation. Over the last decade, a number of professional organizations have released comprehensive treatment guidelines, but recommendations are based on expert opinion, as evidence-based data are lacking. Clinicians who encounter complex biomedical cases may struggle without evidence-based guidance. Further clinical based research is needed to support informed medical decision-making in the office setting.


Problems with insurance coverage present significant barriers to care. Fourteen percent of transgender people are uninsured, and one in four reported problems related to insurance due to being transgender. These problems included refusal by insurance companies to change name and gender when requested (17%), denial of coverage for gender-specific services such as Papanicolaou (Pap) smears or mammograms (13%), and denial of coverage for routine care (7%), transition-related surgery (55%), and hormone therapy (25%). Many policies deny coverage for transition-related care, which has a disproportionate impact on the social, economic, legal, political, medical, and mental health of low income transgender communities and people of color.


Over the last few years, attention to transgender people in the media has reached a tipping point, with an increase in the coverage of their personal stories, societal issues, and governmental interventions. As a result, public debate around the rights of transgender people has swelled, with opponents pitted against proponents from the corridors of public schools all the way to the supreme court. The news is full of stories about bathroom bills and gender-based bullying. Hate groups masquerading as professional organizations publish their own recommendations for care, which are read by vulnerable parents and providers. Religious groups also contribute to the national debate, speaking out in favor or against affirming one’s gender identity. Although trained to evaluate the medical literature, providers, medical ethics committee members, and hospital administrators are all products of the same culture and bring implicit bias to exam and board rooms.


These many barriers to care arise as transgender people attempt to negotiate the medical system. Will the office staff treat me badly? Will my insurance cover my care? Will the doctor understand who I am, what I need? Is it worth the effort to try to get care?




Removing Barriers to Care: Creating Trans-Affirming Medical Environments


Hospitals and outpatient clinics can intentionally address barriers to care and create welcoming and inclusive patient-centered medical systems. Steps involve choosing a model for care, constructing appropriate visual cues, providing cultural competency training, capturing appropriate demographic information, updating policies and procedures, and learning to provide clinically appropriate services.


Intentional provision of care for LGBT patients usually employs one of two models: LGBT-specific care delivery (a clinic designed to serve this population), or LGBT-embedded care delivery (inclusive services offered within a general ambulatory care practice). In large cities, LGBT-specific clinics are often Federally Qualified Health Centers in neighborhoods with a high proportion of LGBT individuals. They usually advertise well, offer a sense of community and expertise regarding LGBT health concerns, and hire staff who are committed to serving this population. In the LGBT-embedded care delivery model, services are provided within the context of a general ambulatory practice. These types of practices vary from site to site in the scope of services offered and expertise of providers. They offer anonymity to patients who prefer not to self-identify, can be established in communities with smaller LGBT patient populations, and may be able to offer more general medical services.


The creation of welcoming environments includes attention to on-site physical structures and visual cues. Welcoming signs and trans-inclusive literature in the waiting room will signal that patients can be open with staff and providers. Gender neutral bathrooms should be installed and properly labeled. Anti-discrimination policies should be prominently displayed. Health centers can identify themselves as LGBT-affirming in hospital directories and marketing campaigns.


Staff should be trained to recognize and address the common problems transgender patients face around insurance coverage. Staff must learn how to bill for gender specific services, such as Pap smears for transgender men and prostate screening for transgender women. Clinicians can request appeals when insurance companies insist that patients conform to outdated standards of care. Patient navigators can direct patients toward policies with inclusive coverage, and advocate for patients who are denied services. Providers should familiarize themselves with local legal or insurance advocacy organizations to assist, when necessary.


Electronic medical records have traditionally offered a binary system for capture of demographic information, missing the opportunity to describe and measure data on sexual and gender minorities (SGM). The Institute of Medicine, under the auspices of the National Institutes of Health (NIH), now recommends routine capture of sexual orientation and gender identity data in all medical records. The Department of Health and Human Services (HHS) has included sexual orientation and gender identity data collection in its requirements for Electronic Health Records certified by Meaningful Use. Health centers that capture this data will be able to identify and target regional health inequities.


Cultural competency training for staff is essential to creating welcoming and inclusive environments. Training should cover explicit and implicit bias, trans-affirming language, behaviors, and interviewing techniques. Staff and providers are usually unaware of the implicit bias they have absorbed from their cultures. Most healthcare personnel pride themselves on being “accepting of everyone,” but true understanding of the lives of those different from ourselves includes acknowledgement of the institutionalized racism, sexism, genderism, ableism, and classism that is an integral part of our culture. These concepts are challenging to address in short cultural competency trainings, and require a willingness on the part of trainees for honest self-assessment. Explicit bias, in the form of racist, transphobic, or homophobic remarks or actions, are easier to identify, but may be equally challenging to address, particularly in clinics with embedded care delivery models, where staff were not necessarily recruited for their commitment to LGBT patients. Culturally competent care includes the recognition that each patient has a unique journey, with differing goals, timelines, and ability/willingness to disclose. Clinicians must learn how to involve family members in the transition process, when appropriate, or support patients who are rejected by family. They must also be aware of the challenges many transgender people face around housing, education, employment, and societal stigma.


Attention to trans-affirming language is an essential part of cultural competency training. Individuals present with an increasing number of terms for self-identification. All office staff must be comfortable asking patients their preferred name and pronouns, and familiar with the common names for identities that fall under the transgender umbrella. They must be comfortable with the concepts of sex assigned at birth, gender expression, and sexual orientation, and understand that patient experience may be fluid. Training manuals are available with teaching tools and lists of definitions, as well as pictorial representations, such as the widely used “genderbread person.” Clinicians should learn the terms transgender people use to describe common practices, such as “packing” (wearing genital prosthesis), “tucking” (hiding the penis and testicles), and “binding” (wearing compressive chest garments).


Clinical competency is essential to creating a welcoming environment, and a holistic, biopsychosocial approach to care works best. Clinicians should learn to recognize the health-care disparities faced by transgender people of different ethnicities, race, ability, literacy, and socioeconomic status. They should familiarize themselves with common health problems, hormone treatment protocols, and primary care protocols for transgender people. They must learn to take accurate sexual histories, and assess for high risk behaviors and substance abuse. They must develop skills in assessing psychosocial stressors, which includes knowing to ask about common legal, spiritual, social, and emotional problems. Clinicians can partner with mental health providers, creating a therapeutic team to assist struggling patients. Professional medical education programs are available for providers who wish to develop these skills.


Clinicians and staff should be aware of transgender-specific community resources and post this information in waiting rooms or on websites, or distribute it via handouts. Patients benefit from access to support groups, pride centers, legal advocacy centers, affirming places of worship, and other social services. Clinicians can also refer patients to legal groups who assist with changing gender markers on documents. We recommend developing close connections to legal organizations that represent transgender people who face discrimination, such as the America Civil Liberties Union, Lambda Legal, the Transgender Legal Defense and Education Fund, and the National Center for Lesbian Rights.


Patient feedback is important to assess the effectiveness of efforts to create welcoming and inclusive spaces. Patients can be asked to participate in focus groups or community advisory boards to comment on their healthcare experience and make recommendations for improvement. Patient satisfaction surveys should include specific questions regarding the experience of transgender patients within the healthcare system.


The US Department of Health and Human Services (HHS) has taken significant steps to advance the health of LGBT communities by implementing article 1557 of the Affordable Care Act, which prohibits discrimination in health care on the basis of sexual orientation and gender identity. The NIH has officially designated SGM as a health disparity population for research, and a new position for a Senior Advisor for LGBT Health has been created within the Office of the Assistant Secretary for Health (OASH). As a result, new services are being evaluated and developed at the federal and state level. The Healthcare Equality Index/Human Rights Campaign offers an online benchmarking tool to assist institutions as they update these policies and then advertise best practices in LGBT health to their community. The first step to reducing barriers to care is to ensure that LGBTQ health care is valued as part of an organization’s commitment to quality.




Principles of Primary Care for Gender Nonconforming and Transgender Patients


Patient care over the life cycle


Primary care providers are uniquely positioned to attend to the medical needs of transgender and gender nonconforming patients throughout all stages of life. Patient needs are age-specific, and individuals may initiate care for primary care and/or gender related services at any stage. Clinicians who routinely ask questions about gender identity for all patients will facilitate the coming-out process by signaling the importance of gender health as part of primary care.


Parents often present asking for guidance with young children exhibiting gender nonconforming behaviors. Some parents present with curiosity and interest, while others struggle with denial, fear, grief, shame, guilt, or partners who have different parenting styles. Clinicians who learn to support parents kindly and without judgment are best able to help families negotiate through normal stages of resistance and acceptance.


Clinicians can counsel that gender exploration is normal and that gender diversity in childhood may or may not persist into adulthood. In studies of prepubertal children referred to gender clinics for assessment, only 6% to 27% of children demonstrated dysphoria that persisted into adulthood. In other studies, gender nonconforming boys were more likely to identify as gay than trans as adults. However, many transgender adults report consistent, insistent, and persistent cross-gender identification from a young age. Clinicians can encourage parents to adopt a supportive, gender-affirming approach for all children, refer to mental health providers when appropriate, and encourage schools to accommodate gender diverse students.


Adolescence is a particularly challenging time for transgender individuals. The development of secondary sex characteristics in the assigned, rather than experienced, gender may trigger gender dysphoria, and pubertal youth often seek medical care for anxiety, depression, substance abuse, eating disorders, behavioral concerns, or suicidal ideation. Teens may be struggling with self-esteem, bullying, body image, coming out, dating, sexuality, peer interactions, homelessness, and family rejection. Clinicians should ask all teens about gender and sexuality as part of routine anticipatory guidance and assessment for distress. Recognizing gender dysphoria is an important intervention, if done with the intention of creating a safe space for addressing related issues. Informed clinicians may facilitate prompt mental health referrals, discuss indications for pubertal blocking medications or hormone therapy, and normalize the youths’ experience.


Transgender adults face a different set of challenges, depending on when they come out and how/if they choose to transition. We recommend asking all adults about their sexual orientation/gender identity as part of routine care, remembering that it may take years to come out to a provider. Many adults struggle with internal distress related to gender dysphoria, and suffer from high rates of suicidal ideation, substance abuse, depression, and anxiety. They may face external challenges, including problems with employment, education, housing, family rejection, parenting, and harassment. Some adults need guidance and referrals for preservation of fertility. Others need assistance accessing mental health services, support groups, voice therapy, hormones, or surgical procedures. Transgender men may need help accessing obstetrical care. Adults with concurrent medical problems will often need support in finding trans-affirming specialists.


The care of older transgender patients requires sensitivity to the fact that these patients may face more barriers to care. As the rate of health problems increases, access to a trans-affirming support network often decreases. Transgender elders came of age in a time when there were fewer options and resources, and may have lived years without affirmation. They may experience grief and regret about lost opportunities or compromises they were forced to make. It may be more difficult, medically and socially, to transition later in life. Transgender elders struggle with ageism as well as transphobia. Many face shock and rejection from family members. Informed clinicians can address and normalize the experience of transgender elders, assist with transitions, and help with access to affirming specialty services.


End-of-life care presents a new set of challenges. LGBT-affirming elder care facilities are often unavailable or difficult to access. Home healthcare personnel and medical specialists may lack training in cultural competency. Nontraditional partners are often excluded from end-of-life decisions and care. Clinicians can insist that elder transgender patients have access to appropriate inpatient and outpatient resources, and that their partners and families are respected. Clinicians can also play an important role by educating community support services.


The patient encounter


Staff and providers can intentionally behave in ways to create safe and affirming medical encounters for transgender patients. Staff should greet patients in a friendly manner, ask about preferred name and pronouns, and document this information in the medical record. Staff must understand that patients have differing degrees of disclosure/“outness,” and some may prefer that the clinician use different names/pronouns than the staff. All should follow strict guidelines for confidentiality, and obtain consent to speak about care plans with identified family and friends. Office forms should be designed to capture information about gender diverse patients and nontraditional families.


Medical History


Medical assessments to initiate primary care or transition-related health services follow the same general outline used for all medical encounters, but must also include attention to the common health issues of transgender people. Acute visits for illness unrelated to gender should follow the usual brief format used for all patients. One should avoid questions related to gender transition, unless relevant to the presenting problem.


For comprehensive primary care, including the initiation or management of GAHT, we recommend that providers first obtain a general history, to include the primary concerns of the patient—which may or may not be related to gender. We follow this with the open-ended question, “Tell me your gender history,” to learn about the patient’s journey in an unstructured manner, with the patient offering the information that is most important/pertinent to them. This can be followed by more direct questions about steps they have taken to transition, with an inventory of body parts present/absent which will be used for routine health maintenance screening recommendations. We ask about how gender dysphoria has impacted aspects of the patient’s life, such as family, personal relationships, education, and employment. We query about barriers to transition and hopes for moving forward. We ask about past medical history, including psychiatric care and mental health issues. We carefully assess for suicidality, when appropriate, with the knowledge that 41% of transgender people have attempted suicide at some point in their life. Surgical history should include transition-related procedures, and satisfaction with results. We ask about medications, both prescribed by clinicians and self-prescribed, with the expectation that some patients have self-treated with hormones obtained without medical supervision. In our social histories, we ask about substance abuse, understanding that risks of tobacco, alcohol, and drug abuse are higher in this population. We solicit information about education, jobs, housing, safety, abuse, and social supports. We create genograms to document family histories, a process useful for capturing medical information as well as an understanding of family systems and supports. When appropriate, we ask about plans for childbearing, and whether the patient wants referrals for the preservation of fertility.


Careful and complete sexual histories are essential, with attention to sexual orientation, contraceptive needs, and high-risk behaviors. The stress of gender dysphoria and medical transition may have a profound impact on sexuality and intimacy. A sensitive intake signals that a provider is comfortable discussing sexual health. Testosterone therapy often increases libido. Estradiol may decrease libido and lead to erectile dysfunction, which pleases some patients and frustrates others. Surgical procedures may impact sexuality in positive or negative ways. Some are more comfortable with sex in a body that aligns with gender identity, while others struggle with surgical sequelae. Clinicians can coordinate with surgeons and qualified sex therapists to assist patients with sexual concerns.


For transition related care, we suggest that clinicians first ask about treatment goals, and use this discussion to tailor recommendations for care. Options for care include (1) changes in gender expression or role, (2) hormone therapy to masculinize or feminize the body, (3) surgery to change primary or secondary sex characteristics, and (4) psychotherapy. Some wish to transition from one gender binary to the other as quickly as possible. Others may endorse a nonbinary gender identity, with the goal of an androgynous gender expression. Some patients want gender-affirming surgery; others do not. Some patients will want full social and medical transition; others may wish to take hormones but still present in their assigned gender.


The Physical Exam


Many transgender patients are anxious about physical exams, and mindful clinicians can intentionally behave in ways to help alleviate discomfort and fear. Patient anxiety may be related to anatomical dysphoria regarding primary and secondary sex characteristics, previous experiences with unsupportive clinicians, or a history of trauma. The first step for clinicians is to acknowledge one’s own level of comfort. Clinicians who lack self-awareness may avoid or provide inadequate exams, or project awkwardness. We recommend asking each patient, “How do you feel about having an exam?” and “Is there anything I can do to make you more comfortable?” Pay attention to the use of gowns and drapes, and offer clothed exams for those who cannot tolerate disrobing. Some patients will prefer a nurse chaperone in attendance, and others will not. Clinicians can ask how patients refer to their body parts, and use affirming language such as “chest” rather than “breasts” or “genitals” instead of “penis/vagina.”


Primary care providers may be asked to provide routine postoperative care for patients who travel long distances for surgery. Establishing a collaborative relationship with the surgeon is essential, and many of the surgeons are adept at advising local providers on postop care from afar.


Physical findings vary depending on the status of hormonal and surgical treatment. We will describe common physical findings for the nonoperative and postoperative patient. Extensive postoperative care is beyond the scope of this chapter.


Physical Exam for Transgender Women


Transgender women may present at any stage of transition. Some will have only typically male physical findings; others will have feminizing changes.


Some women will present with decreased facial/body hair from shaving, depilation, laser, or electrolysis treatments. Clinicians should ask about or note the presence of male pattern baldness, and address this, if problematic. Some women present with local skin irritation, due to adhesives for wigs or breast forms. Feminizing hormones produce varying degrees of breast development, according to genetic predisposition and body habitus. Testes usually diminish in size and get softer with hormonal therapy. Some women practice “tucking” of their testes into the inguinal canals to reduce the genital bulge, and testes may need to be gently pressed back into the scrotum for exams. Although routine testicular exams are not recommended as a screening test for cisgender men, we consider these for transgender women, who may not be comfortable with genital self-exams.


Some transgender women inject with free-form silicone (“pumping”), to enhance their breasts and hips—a practice with many dangerous short-term and long-term complications, including silicone migration, infection, immune reactions, pulmonary embolism, or end-organ damage. Consider and ask about a history of silicone injection for patients presenting with skin conditions, unexplained inflammation, or acute illness.


Postop care for transgender women includes attention to scars from breast implants or facial feminization surgery. Patients are routinely sent home from “bottom” surgeries (orchiectomy, penectomy, and vaginoplasty) before complete healing occurs and may require local follow up. In the immediate postop period, swelling, mild vaginal bleeding, and/or discharge may occur and can be treated supportively. After vaginoplasty, patients are advised to dilate the neovagina on a fixed schedule. Some require assistance/reassurance around the dilation process. The neo-vagina should be inspected for granulation tissue, which can be removed with silver nitrate, after appropriate surgical consultation. Postop fever, hemorrhage, wound infection, dehiscence, or increasing pain should lead to immediate surgical consultation. Wound separation can occur 6% of time and is usually treated conservatively. Infections, strictures, and fistulas are rare but known complications of vaginoplasty, and clinicians should remain alert to these possibilities.


Transgender women who have had a vaginoplasty should have regular pelvic exams to assess for vaginal health, strictures, STDs, or sexual difficulties. Pap smears are not necessary. We find breast exams useful for transgender women, who have unknown risks of breast cancer and often have questions about breast development.


Physical Exam for Transgender Men


Transgender men may also present at any stage of transition, some with only typically female physical findings and others with full masculinization.


After hormone therapy, transgender men usually have an increase in facial/body hair, masculinization of the bony facial structure, deepening of the voice, increased muscle mass, and clitoromegaly.


We perform chest examination based on the presence or absence of breast tissue. Some surgeons leave residual breast tissue during chest reconstruction, and some transgender men choose not to pursue top surgery. Pelvic exams and Pap smears should be performed for transgender men with a cervix. Some transgender men have anxiety, pain, or anatomical dysphoria around pelvic exams. Clinicians should ask about comfort level and discuss ways to mitigate distress.


An increase in acne is common, especially for younger men in early stages of treatment.


Some transgender men suffer from rashes, or acne/excoriations of the trunk from chest binding. Some may have irritation to the symphysis pubis or genitals from “soft” or “hard” packers (penile prosthesis). Transgender men are at increased risk of male pattern baldness.


Postoperative care from chest reconstruction includes attention to scars and nipple grafting. Look for infection, keloid formation, and nipple graft failure. Seromas, collections of fluid, are common after chest reconstruction and sometimes require drainage or compression. Some patients require top surgery revisions to correct inadequate removal of breast tissue, “dog ears,” or other aesthetic problems.


Postoperative care from hysterectomy is routine and can be carried out with assistance from trans-affirming gynecologists. Attention to the presence or absence of ovaries (some surgeons remove and some do not) is essential when evaluating abdominal processes, or assessing bone health.


Postoperative care after phalloplasty/metoidioplasty may be complex and is best performed in close collaboration with the surgeon. The risk of complications depends on surgical technique. Urethral lengthening procedures have a high incidence of stricture and fistula formation. Primary care clinicians should assess for graft viability, strictures, infections, scarring, fistulas, and mental health concerns, which may emerge around protracted postoperative complications.


Diagnosis of gender dysphoria


The criteria for medical treatment with hormones or surgery include “persistent, well-documented gender dysphoria.” Clinicians with limited experience may question their ability to accurately diagnose or evaluate a patient for the appropriateness of medical transition. Evolving definitions for gender variance further complicate diagnosis.


Historically, the medical community has viewed transgender people as mentally ill, and vestiges of this pathologizing approach remain deeply embedded in our culture. The evolution of diagnoses used in consecutive editions of the Diagnostic and Statistical Manual of Mental Disorders (DSM) offers a window into both professional and popular conceptions about SGM. When first published in 1968, the DSM listed homosexuality as a mental disorder. In 1973, the American Psychiatric Association (APA) declassified homosexuality as a mental illness, by a vote of its members. As per Richard Green, “on that fateful day in 1973, in America alone, several million mentally ill persons were cured.” It took until 1980 before the diagnosis of ego-dystonic homosexuality (e.g. unhappiness with homosexual feelings) was recognized as biased and removed.


Similarly, diagnoses have evolved in the DSM to reflect a healthier and more nuanced view of gender diversity. In 2015, the DSM 5 replaced the diagnosis Gender Identity Disorder with Gender Dysphoria , indicating the shift to viewing gender diversity as normal, and Gender Dysphoria as a treatable condition. Many clinicians object that the term Gender Dysphoria is also limited and pathologizing. Some patients have no dysphoria and still wish to transition. To address this, the World Health Organization has recommended that the term Gender Incongruence be used in the International Classification of Diseases (ICD-11). Others argue that because gender variation in children is normal, a distinct diagnosis has no medical utility. The quest for appropriate diagnostic terms is complicated by insurance companies who demand a medical or psychiatric diagnostic code to cover treatment.


The World Professional Association for Transgender Health (WPATH) Standards of Care 7 recommends a gender assessment from a qualified clinician prior to the initiation of gender affirming hormone therapy, to ensure that patients meet criteria for gender dysphoria and have informed treatment expectations. A gender assessment, usually a shorter, more focused process than psychotherapy, may be completed by a mental health or medical provider, and provides an important opportunity to address any relevant social or mental health issues prior to medical transition. Historically, this was performed by mental health providers, who would refer patients to medical providers with a referral letter and recommendations for care. We welcome these referrals in our medical practice, as they offer an opportunity for close coordination of care for patients who need extra support. However, not all patients want, need, or are able to access mental health services, and gender assessments may also be performed by a qualified medical provider under the informed consent model. For patients who are self-treating with hormones obtained from the Internet, we recommend expediting entry to medically supervised care, without gender assessment, a process known as the Harm Reduction Model of Care. We refer those who need mental health services after ensuring that they are medically stable and their hormone regimen is safe.


For new providers who are uncertain of their diagnostic skills, we recommend formal training and close collaboration with mentors and/or experienced providers.


Coordination of care


The primary care clinician can play an essential role in the coordination of care for transgender patients. This may include collaboration with mental health providers, surgeons, advocates, voice therapists, electrologists and laser therapy technicians, and medical specialists.


Our practice is to ask patients about their care teams and routinely request releases so that we may coordinate care, when appropriate. We forward office notes to significant providers on the care team. We establish email connections with consulting clinicians when there is a need to communicate regularly for patients with special needs. We review cases with our collaborating mental health providers on a regular basis, either in staff meetings or online. We collaborate both pre- and postoperatively with surgeons.


We strive to keep communication efficient and focused, as collaboration is time consuming. But the benefits to our patients are enormous, and we as clinicians also benefit from the opportunity to partner with our colleagues across disciplines.


Assistance With Document Changes


Transition often involves legal name changes and changes in gender markers on documents. These documents include, but are not limited to, passports, social security cards, driver’s licenses, birth certificates, and insurance cards.


Patients require a letter from a licensed physician to change their gender marker on a US Passport. The letter must state that the person has had “appropriate clinical treatment for gender transition.” Templates for the required letter are available on the State Department Website. The definition of “appropriate clinical treatment” is intentionally broad, as some patients do not elect medical transitions. Hormone therapy and surgery are not required for most gender marker changes, including those on passports, and the details of treatment should not be included in this letter. A birth certificate, or driver’s license with appropriate gender markers, can be substituted for this passport letter.


Physicians can also supply letters for changes in gender markers on Social Security records. There is no gender marker on the Social Security card, but the record in the government file includes a marker, which may be transmitted to employers.


Individual state law determines the process for changes in the gender marker on birth certificates. While some states accept broad definitions for “appropriate clinical treatment,” others mandate precise and limited definitions of gender transition, including GAHT or gender-affirming surgery. This practice is discriminatory against people who are unable or do not wish to have medical or surgical interventions.




Gender-Affirming Hormone Therapy: Basics for the Primary Care Clinician


Hormonal therapy is highly effective in enhancing psychological well-being for transgender people. Quality of life is enhanced, and symptoms of depression, anxiety, body discomfort, and psychopathology are reduced. All primary care clinicians should have a basic understanding of hormonal therapy. Gender-affirming hormone therapy is considered medically necessary, and is the standard of care for the treatment of gender dysphoria. We will provide a brief overview of masculinizing and feminizing hormones, and discuss the metabolic effects of these medications ( Table 12.1 ). The Endocrine Society recommends initiation of hormone therapy at age 16 or older. Parental consent is required until age 18. Most experts advocate for flexibility around the age for prescribing hormones, and may start hormones before age 16, for youth who meet criteria for gender dysphoria.



Table 12.1

Effects of Testosterone and Estradiol on Metabolic and Other Parameters








































































Parameter Effect Comment
Testosterone
Cholesterol (total) No significant change
High-density lipoprotein (HDL) Decrease by 12 mg/dL
Low-density lipoprotein (LDL) No significant change
Triglycerides Increase by 35 mg/dL
Blood pressure Possible 3–5 mm Hg increase Antihypertensives as needed
Erythrocytosis 4% increase in hematocrit Adjust dose. Keep below 50%
Bone density No increase inosteoporosis risk
Liver function tests 2%–8% increase in enzymes
Male pattern alopecia May or may not be desirable Consider low dose finasteride
Acne Reported severe in 16% Treat or refer if severe
Estradiol
Cardiovascular mortality Possible increase in risk Intensive treatment of cardiovascular risk factors
Venous thromboembolism Increase Consider stopping estradiol prior to surgery, use patch in older patients and high risk patients
Lipids Increase in triglycerides Patch causes less elevation
Blood pressure No significant effect
Bone density No change


Masculinizing therapy


Testosterone is used by transgender men to develop masculine secondary sex characteristics. Testosterone was first used clinically in the 1930s to relieve vasomotor symptoms and urinary disorders in women. The earliest documented use of testosterone for female-to-male gender transition occurred in 1939 in England, for Michael Dillon.


Testosterone acts directly on androgen receptors, or can be converted to two active metabolites. Aromatization by aromatase produces 17beta-estradiol, while reduction by 5alpha-reductase produces dihydrotestosterone (DHT). Estradiol plays a dominant role in bone health in cisgender man, and contributes to sexual functioning. DHT may cause acne and androgenetic alopecia.


Testosterone causes an increase in muscle mass, libido, facial and body hair, and acne. The face undergoes masculinizing skeletal changes and body fat redistributes to a masculine shape. The clitoris enlarges, the voice drops, and menses are suppressed. Many studies confirm that testosterone administration improves psychological functioning and reduces gender dysphoria, anxiety, and depression in transgender men.


Testosterone is usually administered subcutaneously (SQ) and intramuscularly (IM). Patients can be trained to self-inject by nursing staff so that medications can be administered safely at home.


For patients averse to injection, other delivery methods include testosterone implants (Testopel) and topical patches or gels. Topical preparations tend to be pricey and may not be covered by insurance. Patients should be advised to use caution to avoid inadvertent administration of topical testosterone to others via skin-to-skin contact. This is especially true for contact with women and children, who may virilize from accidental exposure. Patients should be counseled to apply the gel to the upper arm or shoulder, to wash before skin contact with another person, and to avoid sharing clothing that may be compromised. Dosing for gel preparation depends on which of the four available preparations are used (Androgel, Axiron, Fortesta, and Testim in the United States). Testosterone undecanoate, an oral preparation that circumvents the first pass through the liver, is available in other countries, but is not FDA approved in the United States. Clinicians may encounter patients who are self-treating with this preparation by purchasing medications on the Internet.


Total serum testosterone levels can be monitored periodically during treatment. The lab draw is obtained midway between injections. If the patch or gel is used, levels should be checked between 2 and 12 hours after application. Doses may be titrated up or down based on serum levels and/or clinical results. The Endocrine Society recommends keeping testosterone in the physiologic range for natal adult males. Lab reference ranges for serum testosterone are approximately 320 to 1,000 ng/dL. Clinicians who are constrained by a lack of insurance coverage may choose to adjust dosing based only on clinical results and forgo the measurement of testosterone levels. However, periodic monitoring of the hematocrit remains essential.


Metabolic effects of masculinizing hormones


In the short and medium term, hormonal transition for transgender men appears to be safe and effective. Data on the long-term risks of testosterone therapy are limited, and more research is needed for conclusive evidence regarding the long-term safety of this intervention. We will review existing studies on testosterone’s known metabolic effects on overall mortality, cardiovascular (CV) health, hematologic risk, bone health, libido, reproductive organs, fertility, skin, hair, and mood.


Overall Mortality and Cardiovascular Risk


The few existing studies that examine all-cause mortality rates for transgender men show conflicting results, and are limited by the failure to separate the effects of testosterone from those of surgical treatment. One study from the Netherlands showed no increase in mortality compared with the general population. A second study showed a late increase in mortality 10 years after gender affirmation surgery, an effect that was attributed to an unexplained higher rate of suicide in the transgender population.


Existing studies show no increase in CV events from testosterone therapy for transgender men, although surrogate markers for CV risk may be increased. Studies of lipid profiles show decreases in high-density lipoprotein (HDL) of 4 to 13 mg/dL, increases in triglycerides of 6 to 32 mg/dL, and possible elevation of low-density lipoprotein (LDL) and total cholesterol with testosterone treatment. The clinical significance of these changes is unknown. Testosterone therapy has not been shown to cause significant increases in blood pressure or diabetes, although the quality of these studies is low due to the use of retrospective cohorts. Testosterone treatment increases lean body mass while estrogen deficiency causes increased intra-abdominal and subcutaneous body fat. Weight gain is common, and may predispose to medical conditions associated with obesity.


Erythrocytosis


Erythrocytosis, an increase in absolute red blood cell mass, is a known effect of androgen treatment and increases the risk of stroke. Strokes caused by erythrocytosis can be thrombotic or embolic. Measurement of actual red cell mass involves isotopic methods, which are beyond the usual scope of practice. Hematocrit and hemoglobin are easily measured and used as surrogate markers for an absolute increase in red blood cell mass. Increased hematocrit (polycythemia) may also be caused by disease processes, such as polycythemia vera, chronic hypoxia, or a decrease in plasma volume due to dehydration, diuretic use, or burns (relative polycythemia). All causes must be considered before assuming polycythemia is due to testosterone use.


The Center of Excellence for Transgender Medicine protocol recommends measuring hematocrit prior to initiating GAHT, at 3, 6, and 12 months, and then every 6 to 12 months. Testosterone dosing can be reduced in the setting of polycythemia. Some protocols suggest changing to topical testosterone, which may be less erythrogenic. Therapeutic phlebotomy can be used to treat hematocrit levels greater than 53%, with a goal of less than 50% to 52%. For patients with significant risk factors for stroke, such as smoking and advanced age, a lower goal for the hematocrit may be more appropriate.


Bone Health


Most studies show either a neutral effect or increased bone mineral density (BMD) with testosterone therapy. Data show decreased BMD after oophorectomy, so adequate testosterone dosing must be prescribed after gender affirming oophorectomy.


Libido


Most patients on testosterone therapy develop varying degrees of clitoral enlargement. Some patients are bothered by hypersensitivity of the enlarging clitoris, or are troubled by erections. Some transgender men apply small amounts of topical testosterone to the clitoris to enhance growth, though this practice is not evidence-based. Most patients report an increase in libido, and a change in the quality of orgasm.


Menses, Vagina, and Uterus


Testosterone therapy suppresses ovulation and causes endometrial atrophy. Amenorrhea is expected within 6 to 9 months of initiation of treatment. Many transgender men on testosterone report crampy pelvic pain for reasons that are not well defined.


Fertility and Pregnancy


Although testosterone therapy usually eliminates ovulation and menses, pregnancy has been known to occur. Transgender who engage in vaginal intercourse with partners who have a penis should be counseled about the use of birth control. Birth control options include barrier methods, progesterone oral contraceptives, intrauterine devices (IUD) or implantable hormone devices. If pregnancy is suspected, testosterone should be stopped immediately.


There is a lack of studies that examine the effects of testosterone on fertility for transgender men. Historically, clinicians have counseled patients to consider embryo or oocyte cryopreservation prior to initiating hormone therapy. More recently, reports indicate that transgender men have achieved successful pregnancies and some are able to chestfeed. Further studies are needed before we can counsel patients on the risks of prior use of testosterone on fetal health.


Although not evidence-based, most providers recommend stopping testosterone 6 months prior to conception. Pregnancy can occur prior to the return of menses. Transgender men remain off testosterone until after delivery, or after cessation of chest-feeding. The length of testosterone treatment may influence the likelihood of becoming pregnant.


Hair/Skin


Testosterone will increase facial and body hair in transgender men with this genetic predisposition. It may take 2 to 5 years for maximal facial hair growth. Testosterone often induces a male pattern hair line, with a central peak in the midbrow, and lateral recession. It may induce male-pattern baldness, which, if severe, can be treated with finasteride or topical minoxidil.


Acne is a common problem for transgender men on testosterone. Acne usually peaks at 6 months, and shows significant improvement by 12 months. Hormone-induced acne usually responds well to conventional acne treatments.


Mood Effects


Testosterone therapy has been shown to consistently lead to reductions in anxiety, depression, and dysphoria in transgender men. However, mood changes may also occur, and some report increased irritability, anger, or agression. Doses should be decreased or therapy stopped for patients who complain of worsening mood.


Drug Interactions


There are relatively few significant drug interactions with testosterone therapy. Testosterone has been shown to increase the hypoglycemic effects of diabetic medications, enhance anticoagulant effects of warfarin, and increase fluid retention in patients on corticosteroids. Clinicians should monitor patients on these medication combinations appropriately.


Feminizing therapy


Feminizing hormones are used to stimulate the development of feminine secondary sex characteristics. Typically estradiol is used for feminization and androgen blockers are used to block receptors for testosterone and its metabolites. Clinicians should be familiar with feminizing regimens, routes of administration, dosing, and the metabolic effects of feminizing hormones on CV and other systems.


The use of estrogen with an antiandrogen is the standard of care for feminizing therapy. Estrogens can be delivered orally, topically, or intramuscularly. Recommended preparations include 17beta-estradiol (estradiol) given orally or via topical patch. Ethinyl estradiol is no longer recommended due to high rate of thrombotic events.


While estradiol alone will suppress testosterone, antiandrogen medications are usually added to suppress testosterone levels to the natal female range and block the effects of testosterone. Spironolactone and cyproterone acetate (frequently used in Canada and Europe) are the most commonly used antiandrogens. Medroxyprogesterone acetate and Lupron and may also be used for their antiandrogenic effects. Patients on spironolactone should be monitored for hypotension, renal insufficiency, and hyperkalemia, although these are infrequent complications. Antiandrogen therapy should be stopped after orchiectomy.


At times, clinicians add progesterone to the feminizing regimen, although little data are available about the effectiveness or risks to this intervention. The Women’s Health Initiative shows that estrogen plus progestin is associated with increased risks of breast cancer, heart attacks, stroke, and venous thromboembolism (VTE) in postmenopausal cisgender women. It is unknown if these risks can be extrapolated to transgender women. Patients often request progesterone, due to reports that it may enhance breast development. However there is no published data supporting this effect.


The Endocrine Society Guidelines recommend monitoring estradiol and testosterone levels, with a goal of normal physiologic range for natal females. They recommend suppression of testosterone levels to less than 50 ng/dL, and maintenance of estradiol levels in the 100-200 pg/mL range. Once testosterone levels have been adequately suppressed, it is unclear whether increasing the estradiol levels into the high-normal range will bring additional feminization.


Metabolic effects of feminizing hormones


Active estrogen-sensitive cancer is an absolute contradiction to estrogen. Relative contraindications for estradiol include prior venous thrombosis, and family history of breast cancer in two or more relatives, coronary artery or cerebrovascular disease, severe liver disease (transaminases greater than three times upper level of normal), and severe migraine headaches. We will review the metabolic effects of feminizing therapy on CV risk, VTE, prolactinemia, bone health, libido, prostate and penis, hair/skin, and mood.


Overall Mortality and Cardiovascular Risk


One long-term study demonstrated an increase in all-cause mortality in transgender women, but the increase was not attributed to hormone use. Another long-term study showed no increase in all-cause mortality in a transgender women.


Data on the effects of feminizing therapy on CV health are mixed. Some retrospective studies show increased risk for myocardial infarctions, cardiac mortality, and strokes in transgender women on estrogen, while others show no increase in risk. Feminizing therapy has been shown to increase serum triglycerides without changes in other lipid parameters. However, the overall quality of relevant studies is low, and further prospective studies are needed to delineate the level of increased risk for CV events.


Venous Thromboembolism


When oral ethinyl estradiol was used for feminization, the rate of VTE was up to 45 times the expected rate. Follow-up studies demonstrated that oral 17beta-estradiol and transdermal estradiol had lesser prothrombotic effects. Currently, oral 17beta-estradiol, transdermal estradiol, or injectable estradiol are the recommended estrogen preparations for GAHT.


Transdermal estrogen has the lowest rates of VTE in postmenopausal cisgender women on estrogens. We recommend transdermal preparations for all patients at increased risk for VTE. Screening for thrombophilia and prophylactic aspirin for prevention of VTE is not recommended (though aspirin may be recommended for prevention of cardiac events).


Transgender women who develop VTE while on oral estradiol should be changed to transdermal estrogen, if they choose to continue hormonal therapy. VTE risk may also be reduced by lowering estrogen dosage. Some clinicians recommend the indefinite use of anticoagulation for those who choose to continue estrogen after VTE.


Perioperative protocols for patients on estradiol are controversial and not evidence-based. Some experts recommend stopping estrogen 2 weeks before surgery and waiting 3 weeks to resume treatment, due to perioperative risk of VTE. Others allow continuation of estrogen perioperatively, with or without anticoagulation.


Prolactinemia and Prolactinomas


Patients on estrogen therapy should be monitored clinically for signs of pituitary prolactinoma, such as galactorrhea, visual changes, and headache. While no clear correlation has been established, there are numerous case reports of pituitary prolactinomas in transgender women.


Hyperprolactinemia occurs frequently in patients on feminizing hormones, with rates of 4% to 30%. Estrogens cause increased prolactin levels by stimulating the proliferation of lactotroph cells and upgrading transcription of prolactin genes. Typically the prolactin levels increase in the first year and then gradually decrease. The antiandrogen cyproterone acetate may also play a role in the development of hyperprolactinemia. Although hyperprolactinemia occurs frequently, pituitary prolactinomas occur in less than 0.1% of patients.


Routine monitoring of serum prolactin levels is controversial. The Endocrine Society and other experts recommend obtaining a prolactin level at baseline and then every 1 to 2 years. However, others recommend monitoring clinically for symptoms of prolactinoma without routine blood testing. One disadvantage of screening is the unnecessary alteration of feminizing treatment. Small, asymptomatic prolactinomas do not always require treatment, and large prolactinomas typically respond well to dopamine blockers, so there may be limited benefit to early diagnosis. It is not necessary to reduce or stop estrogen therapy for hyperprolactinemia. Prolactin levels may return to the normal range after orchiectomy.


Bone and Muscle


Transgender women who have had orchiectomy are at increased risk for osteoporosis. In one long-term study, osteoporosis of the spine was observed after 10 years in 23.4% of postoperative transgender women on GAHT. Another study showed that nonoperative transgender women had a lower bone mineral density compared with cisgender men prior to initiating GAHT, but that skeletal status was well preserved on feminizing hormones.


Feminizing hormone use is associated with significant muscle loss in the first 2 years of treatment. Approximately 4 kg of lean body mass are lost following the initiation of androgen deprivation in transgender women.


Libido


Most transgender women report decreased libido on feminizing therapy, as well as decreased frequency of spontaneous erections and decreased ejaculation. Erectile dysfunction is common, and patients may benefit from treatment with sildenafil or tadalafil. Some women report the ability to achieve orgasm without erection, or a different quality to their orgasm.


Penis, Testes, Prostate, and Fertility


The penis may appear smaller for patients on feminizing hormones. Estradiol leads to testicular atrophy and diminished production of testosterone. Atrophy of the prostate can lead to transient postvoid dribbling in the initial year of therapy. Some clinicians report increased incidence of prostatitis during the first years of hormonal transition. Semen volume is decreased or absent. Cases of prostate cancer have been reported in transgender women on feminizing hormones, though the risk may be decreased.


Feminizing hormones may affect fertility, and most clinicians discuss options for sperm banking prior to treatment. Therapy does not guarantee infertility, however, and transgender women can impregnate a sexual partner if contraception is not used.


Hair and Skin


Feminizing hormones cause softening of the skin and decreased hair growth on the body. Facial hair is less affected, and many transgender women seek electrolysis or laser treatment for the face.


The effect on male pattern baldness is variable, but some women have decreased hair loss or even regrowth of hair on feminizing therapy. Hair follicles convert testosterone to dihydrotestosterone (DHT), which causes hair follicles to shrink in people with a genetic predisposition for alopecia. Finasteride decreases serum and scalp DHT by inhibiting conversion of testosterone to DHT, and may be used to treat alopecia in transgender women. Finasteride alone is not an adequate antiandrogen for feminizing regimes.


Mood


Many transgender women report an increased sense of well-being on feminizing hormones. Subjective reports of increased tearfulness, emotional sensitivity, and an awareness of a broader emotional landscape are common. Some patients describe a decrease in aggression and irritability.

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Sep 13, 2019 | Posted by in General Surgery | Comments Off on Primary and Preventative Care for Transgender Patients
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