Reproductive Health Risks and Clinician Practices with Gender Diverse Adolescents and Young Adults

Abstract

Background:

Reproductive health counseling is essential for adolescents and young adults (AYAs). Transgender and gender diverse (TGD) AYAs would benefit from tailored counseling given concerns about iatrogenic infertility and sexual dysfunction, and high rates of interpersonal violence, unplanned pregnancies and sexually transmitted infections, yet there are multiple obstacles to providing this care at the patient/family and clinician levels.

Objectives:

This narrative review summarizes the literature on reproductive health considerations for TGD AYAs, current practices, and clinician barriers and facilitators to providing culturally sensitive reproductive care for TGD AYAs. Specific areas of focus include: reproductive health goals, risks, and access barriers; clinician knowledge practices and challenges; and strategies for improving counseling practices.

Materials/Methods:

PubMed, Google Scholar, Medline, Web of Science, and PsycInfo databases were searched using the following terms: transgender, non-binary, gender expansive, gender non-conforming, reproductive health, sexual health, fertility, family planning/building, contraception, sexual dysfunction; gender affirming hormones/surgery, clinician, physician or provider knowledge and attitudes; counseling.

Results:

Many TGD AYAs desire biological children and improved sexual experiences. TGD AYAs may experience infertility and sexual dysfunction associated with transition; have disproportionate HIV/STI risk; experience high rates of interpersonal/sexual violence and trauma; and encounter barriers to accessing competent medical care. Clinicians lack knowledge about reproductive health needs of TGD AYAs; inconsistently discuss family building options; perceive counseling challenges; and desire more training in this area.

Discussion:

Enriched communication training for medical/mental health clinicians is necessary to provide a skilled workforce for TGD AYAs. Web-based reproductive health training with other populations (e.g., oncology) demonstrates efficacy for improving communication skills and confidence in counseling,

Conclusion:

This review highlights barriers to adequate reproductive care encountered by TGD AYAs, exacerbated in underserved minority youth. Dedicated training for providers, and programs increasing access are important goals for improving care. The need for additional research is also emphasized.

Transgender and gender diverse (TGD) adolescents and young adults (AYAs) experience significant health disparities owing to historical marginalization in healthcare settings; a lack of trained healthcare providers;^1–3 stigma;⁴ and intersecting identities⁵ that may impede access to and receipt of appropriate healthcare. Data from the Williams Institute showed ~150,000 adolescents aged 13–17 years and 206,000 young adults aged 18–24 years in the United States (US) identify as TGD.⁶ More recent estimates suggest up to 2.7% of high-school students identify as TGD.⁷

Many of these youth experience gender dysphoria, defined as distress related to incongruence between gender identity and assigned sex at birth.⁸ Mental health risks are also prevalent in this population including significant anxiety⁹ and high rates of suicidality.¹⁰ Early medical access to gender-affirming care is associated with reduced suicidality.¹¹ Increasing numbers of TGD AYAs are seeking medical and surgical interventions to reduce dysphoria by bringing their bodies and gender identities into alignment.¹² A recent American Academy of Pediatrics (AAP) policy statement called for provider education to facilitate provision of comprehensive, gender-affirming, and developmentally appropriate care for TGD AYAs.¹³ The AAP also published guidelines recommending integrating reproductive health counseling into routine healthcare for all AYAs.¹⁴

Reproductive health, defined by the World Health Organization as a constellation of factors including family building, sexual function, contraception and HIV/STI prevention, is especially paramount to address in TGD AYAs.¹⁵ Reproductive health education and counseling is appropriate for all AYAs as a fundamental aspect of preventive health care. TGD AYAs, however, have several unique considerations and risks that make reproductive health counseling both more critical and more complex than for AYAs in general. Gender-affirming medical and surgical interventions can have negative effects on fertility and may also impact sexual function in a number of ways, both positive and negative, depending on an individual’s sexual function goals.¹⁶ Reproductive health risks are elevated further for TGD AYAs who have other minoritized and intersecting identities, such as race or immigration status for example.¹⁷

Although increasing numbers of TGD AYAs are seeking gender-affirming medical care,¹² tailored reproductive health counseling is often unavailable or inadequate.¹ Recent surveys of medical and mental health providers involved in TGD healthcare have shown gaps in reproductive health knowledge, counseling practices, and referral patterns.^9,18 The goals of this narrative review are to summarize the literature on TGD AYAs regarding: 1) reproductive health goals, risks, and access barriers; 2) clinician knowledge practices and challenges; and 3) strategies for improving counseling practices. Finally, priorities for future research are emphasized.

METHODS

To inform this narrative review, we searched Pubmed and Google Scholar for peer-reviewed publications (English language) with the following key words: transgender, non-binary, gender expansive, gender non-conforming, reproductive health, sexual health, fertility, family planning, contraception, family building, sexual dysfunction; gender affirming surgery, gender affirming hormones, clinician, physician or provider knowledge and attitudes; counseling. No date restrictions were used. Consistent with a narrative review approach, we summarize research on each topic of interest.¹⁹

RESULTS

Reproductive health goals

Many TGD adults desire biological children.^20–23 Organizations such as the American Society for Reproductive Medicine have asserted the same reproductive options should be offered to individuals at risk for fertility loss regardless of gender identity (e.g., TGD AYAs pursuing hormonal or surgical interventions that may impact fertility).²⁴ Several published cases report transgender adults opting for fertility preservation and/or pregnancy.^25–28 In contrast, studies among TGD AYA report variable rates of fertility preservation, ranging from <5% in the United States,^29,30 to higher rates of sperm cryopreservation in other countries such as the Netherlands, Australia, and Israel.^31–33 It is possible these rates are higher in countries where fertility preservation is covered by a national health plan, as opposed to the United States where coverage by public or private insurance is challenging.

Many TGD adolescents state they would prefer to adopt or possibly opt out of parenthood altogether.^29,30,34,35 However, in one recent study, many of the youth surveyed acknowledged the possibility that their perspectives on parenthood may change with time.³⁵ Acknowledgement by youth of the potential for change in parenthood goals as they age suggests they may regret lack of uptake of fertility preservation if they desire biological children in the future. Various studies have been conducted with transgender adult participants who received gender affirming medical interventions (medical and or surgical), with general findings indicating considerable heterogeneity in parenting goals, many expressing the desire to parent, and some adults indicating a desire for biological children.^20,36

Beyond fertility, providers of TGD AYAs should routinely consider and address sexual health and functioning. Transgender youth are no different than cisgender youth in their desire for satisfying sexual experiences.³⁷ Routine counseling is needed to proactively promote positive sexual function among TGD AYAs who might be at risk for persistently poor quality of life (QoL) due to sexual inhibition, discomfort, and/or a history of sexual victimization.

Reproductive health risks

Fertility, contraception, and sexual function

Medical and surgical interventions used to facilitate gender transition may cause fertility impairment to varying degrees. Puberty blockers (gonadotropin releasing hormone agonists) do not permanently impair fertility but may prevent gamete maturation, which impacts oocyte maturation/ovulation and the development of viable sperm.³⁸ Future fertility needs to be considered prior to starting puberty blockers, given that many adolescents begin treatment with gender affirming hormones (estrogen and testosterone) while still on blockers,³⁹ impeding the gametes from further development. These discussions with patients can be particularly complex, given that established fertility preservation options are limited for youth who are early in puberty.

Gender affirming hormones and surgical interventions may have negative effects on fertility in certain cases. Research in transgender women treated with estrogen shows decreases in testicular volumes and impairment of spermatogenesis.^40,41 Effects of testosterone on ovarian function are less clear, with some studies raising concerns about negative effects on fertility and other studies reporting pregnancies during or after testosterone treatment.⁴² Surgical interventions to remove some or all reproductive organs have obvious implications for reproductive capacity.

While it is critical to discuss potential fertility impairment related to these gender-affirming hormonal treatments, providers must also emphasize that gender-affirming hormones are not effective forms of birth control. Research has shown TGD AYAs have this misconception when fertility preservation options have been discussed.⁴³ Recent surveys show TGD AYAs inconsistently use contraception when engaging in penile- vaginal or penile – anal intercourse, increasing STI health risks and putting them at risk for unintentional pregnancy.^25,44 Literature is limited on the frequency and type of contraception used among TGD AYAs.^43,44 Two recent studies of TGD AYAs showed 43–46% of those assigned male at birth and 39–54% of those assigned female at birth did not use condoms or birth control during their last sexual encounter(the authors do not specify the type of sexual encounter).^45,46 Lack of contraception use is also associated with use of substances, such as drugs or alcohol, which further exacerbates risky sexual behaviors.⁴⁷ A Canadian study of 429 sexually active TGD AYA reported 6% (N=26) of TGD AYAs were involved in an unintentional pregnancy, compared to 2% of cisgender AYAs.^5,48

Sexual function is also an issue to be addressed as transgender adults report lower sexual satisfaction (27–41%) and higher sexual dissatisfaction (27–39%) than cisgender adults.⁴⁹ The exact reasons for these differences remain unclear. Gender affirming surgical treatments may results in adverse events. Although rare, the following complications have been reported and may impact sexual function: 1). vaginoplasty risks: bleeding, infection, skin or clitoral necrosis, suture line dehiscence, urinary retention, or vaginal stenosis or prolapse,⁵⁰ rectovaginal or pararectal abscess, development of fistulae between the rectum and neovagina, vaginal prolapse; 2). phalloplasty and metoidioplasty risks: urethral strictures, fistulae,⁵¹ wound infections, wound breakdown, urinary catheter difficulties, flap loss, pelvic or groin hematomas, and rectal injury.⁵⁰ Any of these complications are likely to impact sexual desire and function.⁵²

Some studies report transgender adults engage in less frequent sexual activity than cisgender adults, particularly those who have body image concerns or have experienced sexual violence harassment.⁵³ Other studies have shown increased sexual activity and higher satisfaction among TGD individuals who have had gender-affirming surgery.⁵⁴ Gender-affirming treatments can have a positive impact on body image, sexual function, and quality of life (QoL) in TGD adults,⁴⁹ but the impact of these treatments on TGD AYAs is less clear. Further, access to gender-affirming treatments remains variable across centers and regions.

Sexually Transmitted Infections

High rates of risky sexual behaviors among TGD AYAs raise concerns about other significant and long-term deleterious health effects.⁵⁵ An estimated 10% of all sex workers in the U.S. are transgender. A national survey of 6,400 TGD people found that 15% were HIV positive,⁵⁶ and transgender women are at particular risk as they have high likelihood of engaging in condom-less anal intercourse.⁵⁷ Along these lines, a Canadian study showed TGD AYAs were six times more likely to be diagnosed with a STI than their cisgender counterparts.⁴⁸ A study of 300 racial/ethnic minority transgender adults found perceived discrimination and expectations for rejection associated with sexual risk-taking.⁵⁸ Pre-exposure prophylaxis (PrEP) is an effective method of preventing HIV infection. Recent guidelines suggest all sexually active TGD AYAs should be offered PrEP, in addition to the HPV vaccine to reduce cancer risk,⁵⁹ but uptake among TGD AYAs is sub-optimal.⁶⁰

Interpersonal violence and sexual assault

The 2015 U.S. Transgender Survey found 47% of participants had a history of sexual assault, with higher prevalence among those engaged in sex work, were homeless or had disabilities.³ Additionally, 54% of respondents reported relationship-based violence.³ TGD people of color are at particular risk, as noted by the high homicide rates in transgender women of color. It is critical for reproductive health counselors to be trained to screen for these elevated risk factors: inquiring about sexual violence history, trauma, and other mental health sequelae related to victimization.³ Clinicians should also refer TGD AYAs for accessible gender sensitive sexual and teen violence assault counseling, sexual and relationship safety education, and gender and trauma informed mental health services when appropriate.

Reproductive health access barriers

Lack of access to sensitive and informed clinicians can pose barriers to reproductive health services,⁶¹ ultimately leading to increased rates of HIV/STIs, unplanned pregnancy, diminished sexual health and functioning, and potential future regret related to infertility.⁶² Barriers to fertility preservation specific to TGD populations include sociocultural expectations regarding parenthood and the potential for worsening dysphoria associated with fertility preservation interventions, tissue reimplantation, and pregnancy. Additionally, fertility preservation options for early pubertal youth are limited to testicular tissue cryopreservation (which is currently experimental) and ovarian tissue cryopreservation (which may be of questionable benefit in TGD youth given unknown fertility impacts of testosterone and the potential risks of removing an ovary).⁶³ Access to fertility specialists for preservation or other aspects of reproductive health care may also be hindered by the high costs of such services in many countries such as the United States.⁶⁴

Further, people whose gender identity does not align with their reproductive anatomy may be uncomfortable seeking reproductive healthcare, which can lead to adverse outcomes and reduced quality of life.⁶⁵ For example, a person born with a uterus and cervix who does not identity as female, may be reluctant to receive annual screening of those organs, or attend to health information on “women’s healthcare.”²³ TGD AYAs may not mention reproductive health concerns to their providers or may address these concerns using unfamiliar vernacular (e.g., “my front hole doesn’t lube”), with the untrained provider unable to discern the complaint and/or be uncomfortable asking for clarification. Additionally, TGD AYAs may not know how or where to find providers knowledgeable about transgender health care, especially in resource poor settings such as rural communities. Further, an initial insensitive or traumatic medical experience (e.g. being misgendered by a provider) may reduce the likelihood of seeking subsequent important health-related care. Anticipated bias in healthcare is prevalent among the TGD population. A study of 350 TGD people reported 41% had experienced healthcare discrimination, and 48% of 544 transmasculine individuals expressed mistrust of medical institutions and perceived stigma from providers.⁶¹

Intersecting minority identities in TGD AYAs further exacerbate health disparities in already marginalized populations. Intersectionality refers to the interlocking systems of oppression experienced by individuals embodying multiple minoritized identities, including those related to gender, race, ethnicity, social class, and sexual orientation.^66,67 Due to structural systems of oppression, possessing minoritized identities differentially impacts an individual’s healthcare experiences. For instance, a recent U.S.-based survey of transgender individuals found transgender people of color experienced more significant patterns of discrimination than white transgender respondents, although all transgender individuals were at greater risk for discrimination than their cisgender counterparts.³ Transgender individuals who identified as undocumented, people of color, or disabled report higher rates of mistreatment, poverty and barriers to health care.³

Clinician knowledge, practices and challenges

Despite multiple guidelines stating reproductive health counseling (including discussions about fertility preservation) should occur routinely,^68–72 and research showing TGD individuals desire this counseling, recent studies indicate only a minority of TGD AYAs have these discussions with their healthcare teams.^9,34 A recent survey of medical and mental health providers indicated that clinicians lacked knowledge of the reproductive health needs of TGD AYAs;⁹ inconsistently discussed family building options;^9,18 and perceived counseling challenges due to a number of factors. These barriers included developmental factors related to counseling younger adolescents; knowledge limitations due to lack of data on long-term effects of hormonal interventions on fertility; and concerns about costs and invasiveness of fertility preservation interventions. A prevailing thought among respondents was the TGD AYAs were hyper-focused on their transition and access to gender affirming care, and were not interested in fertility preservation; further, clinicians in the United States felt the financial costs of fertility preservation were unaffordable for most families. Many respondents expressed a desire for more training.^9,18 Importantly, increased knowledge is associated with increased frequency of counseling, and multiple studies document low levels of knowledge among clinicians caring for TGD AYAs.^73–76

Regarding sexual health and STI prevention, studies show clinician awareness of PrEP for TGD AYA is low, particularly among clinicians who have small numbers of TGD AYA in their patient populations.^77,78 Recommendations for HPV vaccine vary by age, sexual orientation and sex assigned at birth.^59,79 There is little data on uptake of the HPV vaccine or rates of offering the vaccine to TGD youth. A recent study suggests providers might be offering the HPV vaccine based on presumed risk on the basis of sex assigned at birth vs. gender identity.⁸⁰ Improving clinicians’ ability to sensitively take a sexual history and utilize cultural humility in counseling and treating TGD AYA may therefore increase offering and uptake of HPV vaccine in this group.

DISCUSSION

Strategies for improving reproductive health counseling practices

As outlined above, comprehensive reproductive health counseling for TGD AYAs should include discussions about: youths’ reproductive health goals; contraception use and safer sex practices; implications of gender-affirming hormonal and surgical interventions on fertility, sexual function and satisfaction; relationship safety and exposure to risks (e.g., sex work), violence and trauma; and preventive care to preserve reproductive health. Additionally, clinicians need to be sensitive to the specific needs and elevated reproductive health risks of TGD AYA with multiple minoritized identities.

With a steadily increasing number of TGD youth seeking hormonal interventions at earlier ages,^6,81 these discussions are becoming more clinically and ethically complex. Beyond structural barriers such as cost, clinicians must address the AYA’s competing demands (i.e. urgency to start treatment) and developmental factors, in addition to family dynamics (e.g. discordance between AYAs’ and parents’ perspectives) and access barriers.^65,82,83 Additionally, clinicians are often tasked with providing education about topics AYAs do not view as important, such as contraceptive options, or that they are not well trained to address, such as sexual and other interpersonal violence.^84–86 Given the numerous challenges and the sensitive nature of these topics, clinicians must be both knowledgeable and skilled at building rapport and trust with TGD AYAs.⁸⁷ For example, inquiring about chosen names and pronouns, using preferred terms for body parts and reproductive anatomy, approaching physical exams/procedures with caution and, as warranted, employing trauma sensitive approaches, are all necessary aspects of reproductive health encounters with TGD AYAs.

Recent research shows communication skills and confidence in reproductive health counseling are suboptimal for clinicians who provide care to TGD AYAs.^88,89 Web-based training in reproductive health with other populations (e.g., oncology) demonstrates efficacy for improving communication skills and confidence in counseling, and for reaching clinicians in rural or under-resourced areas who may have difficulty accessing desired reproductive health training.^88,90–92 Enhancing reproductive health counseling with TGD AYAs would improve the quality and sensitivity of care, reduce mistrust, increase satisfaction with health services and safety for youth, and optimize TGD AYA reproductive health outcomes. These programs should be geared towards a heterogeneous group of clinicians, as both medical (e.g., physicians, nurse practitioners) and mental health (e.g., psychologists, social workers) clinicians, play important roles in the reproductive health care of all AYAs.^91,92

Specific training needs may vary between groups – medical providers may have more knowledge in some domains (e.g., implications of medical/surgical interventions on fertility) whereas mental health providers may be more comfortable exploring patient priorities, taking into account cultural, social, developmental, and mental health considerations. However, certain topics such as health literacy are important for both provider groups. If clinicians use language that does not make sense to the patient this can create mistrust and contribute to non-adherence to treatment plans.⁹³ Patient educational materials should be tested and assessed for health literacy by the demographic groups for which they are intended.

Communication training for medical and mental health clinicians can be enhanced by using talking points and scripts. Talking points may be helpful for initiating conversations on a topic that may be uncomfortable for both the clinician and patient, and could ensure consistency of messages across patients. Table 1 provides a list of objectives and talking points related to reproductive health topics.⁹⁴ Counseling approaches should consider that many TGD AYAs may be highly anxious, traumatized, dysphoric and (at least initially) distrustful during these conversations, and eager to proceed with medical intervention.⁹⁵ At the same time, TGD AYAs often have high levels of resilience.⁹⁶ A multi-disciplinary approach should be used to approach these discussions prior to initiation of medical interventions, and on an ongoing basis thereafter. In addition to addressing fertility, contraception, sexual function and STI prevention, any training on reproductive health counseling targeting TGD AYAs should include training on cultural sensitivity, as well as safety screening and counseling related to sexual assault, violence in interpersonal relationships, and referrals for self-protection and advocacy (e.g., domestic violence advocacy programs geared toward the needs of TGD AYAs). In summary, enriched communication training for clinicians is necessary to provide a skilled workforce for the TGD AYA population.

Table 1.

Recommended Reproductive Health Talking Points (adapted from Santa Maria et al⁹⁴)

Topic	Talking Points	Strategies
Private consultation	Request time alone with minors to discuss sexual health topics privately.	“I would like to have a few moments with you alone. Would that be okay?” Assure the youth that information will not be shared with the parent unless specifically required by law, such as in the case of abuse or suicidal ideation.
Sexual orientation	Inquire about sexual orientation, Provide local resources for counseling and peer support.	“Are you sexually attracted to men, women, transgender people or neither?”
Gender Identity	Inquire about how the youth identifies with regard to gender. Inquire about pronouns and offer your own.	“I’m Dr. Smith, my pronouns are she/her – what are your pronouns?” “Do you identify as a man? Woman? Transgender” non-binary? Genderqueer/gender fluid or something else?”
HPV vaccination	Recommend HPV vaccination and support completion of the series.	“Have you started the HPV vaccine series to protect against various cancers and diseases caused by HPV?”
Fertility	Identify if potential infertility is a concern. Provider referrals to reproductive endocrinology.	“Have you thought about having a biological child in the future? Do you know how hormones may affect your ability to create a pregnancy?”
High-risk sexual situations	Discuss anticipation of high-risk sexual situations, refusal and negotiation skills, role of alcohol and drugs in sexual behavior, and setting and maintaining personal boundaries.	Role-play scenarios such as parties, going out with friends who use drugs or alcohol, someone wanting to go farther sexually than you do. “Who can you go to where you work or live if you don’t feel safe?”
Healthy relationships, dating violence, safety and trauma	Inquire about coercive sex, dating violence, healthy relationships, safety at home and school, and sexual abuse. Inquire about whether past victimization experiences interfere with current sexual comfort and/or current well-being. Provide education about and information regarding sexual assault and interpersonal violence services, as well as trauma interventions as needed	“Have you ever been hit, punched, slapped, made fun of, teased, or pressured where you work or where you live? “Have you ever engaged in unwanted sexual activity?”
Condom and contraceptive use	Educate on the efficacy and correct use of various contraceptive methods and on the need for another method with condom use. Discuss pregnancy and other risks of sexual activity. Support informed decision making and access to condoms and contraceptives.	“Would you like to become pregnant in the next year?” Respond accordingly with pregnancy prevention counseling (see www.onekeyquestion.org).
STI/HIV testing	Discuss recommendations for STI and HIV screening for sexually actives and the importance of partner testing and treatment if results are positive. Assess high-risk adolescents for the appropriateness of PrEP and PEP.	“Have you had sex? Have you been sexually active with a person with a penis? Or a vagina? Have you had sex with a new partner? Have you and your partner been tested for HIV and STIs?” Role-play discussing testing with a future sexual partner. “How many times did you have vaginal or anal sex where a condom wasn’t used? How many of your partners were HIV positive? ”

HPV = human papillomavirus; PEP = postexposure prophylaxis; PrEP = preexposure prophylaxis; STI = sexually transmitted infection.

Priorities for future research

Clinical research is needed to better understand reproductive health goals and risks in TGD AYAs across ages and developmental stages. Perspectives of parents/caregivers (for adolescents) and partners should also be examined. The exponentially greater health risks associated with multiple minoritized identities requires research to identify the reproductive health experiences and barriers for members of the TGD AYA community who are most marginalized. These studies may be more difficult to undertake given that TGD AYA facing the most barriers to healthcare may be harder to recruit as much of this research takes place in academic clinic settings. Researchers have highlighted the need for intersectional frameworks to account for health inequities in transgender populations. For instance, the Intersectionality for Transgender Health Justice (ITHJ) framework specifies steps to guide researchers seeking to study transgender health to understand and disrupt power structures impeding adequate health care.¹⁷

There is great need to expand patient focused research on improving our understanding of issues of well-being surgical outcomes at different stages of transition for TGD AYAs. For example, transgender men who begin pubertal suppression at early stages of puberty may feel less need for follow-up mastectomies, or require less invasive mastectomies than those who do not take pubertal suppression. However, while there are advantages to early intervention, the limited phallic growth associated with puberty blockers in transgender women has implications for vaginoplasty, if desired at a later point, due to reduced penile growth and occasionally insufficient tissue to perform this feminizing surgery. Instead, additional tissue may be required from another part of the body, often intestinal tissue. Due to these complexities, counseling about potential impacts of pubertal suppression on future aspects of gender affirming medical care should account for various considerations and outcomes.⁹⁷ There is a dearth of understanding about the extent to which each type of gender affirming treatment and the timing of the treatments by age positively or negatively affects sexual practices and satisfaction.

In addition to patient focused research, research with the clinical community is critically needed to understand: 1) best modalities for mental health and medical provider training; and 2) documentation of practice improvements based on trainings. Evidence-based strategies are needed to facilitate developmentally, culturally and trauma sensitive counseling practices among TGD AYAs to mitigate potential distress and regret, , including those that may be associated with fertility loss after treatment. While regret and distress are well-documented in other AYA populations (e.g., those with cancer),^98–102 we cannot assume TGD AYAs will have the same perspectives. Research with older adults who have transitioned is needed to determine if these negative feelings may be anticipated by TGD AYA youth in the future, to better inform counseling practices across the care continuum.