Gender-affirming treatments aim to help an individual’s outward appearance align with their gender identity. These treatments can include cross-sex hormone therapy, vocal and body language coaching, and surgical interventions.1 It is well documented that gender affirmation surgery leads to long-term improvements in patient health and psychosocial status.2–7 However, transgender and gender diverse (TGD) individuals frequently experience poor health outcomes because of barriers faced when trying to access and use health care services.8 Among these challenges is the multidisciplinary aspect of gender-affirming care and the paucity of centers equipped to provide coordinated delivery of many different disciplines
The first academic center for TGD patient care in the United States was the Gender Identity Clinic at Johns Hopkins Hospital, founded in 1966 by a multidisciplinary group of physicians in plastic surgery, psychology, and endocrinology. In providing gender-affirming surgery (GAS) for patients, this clinic not only contributed to the development of genital reconstruction procedures but also demonstrated the necessity for multidisciplinary care from specialists in medicine, mental health, and surgery.9 The Gender Identity Clinic closed in 1979 amid public controversy following the publication of material challenging the benefits of gender-affirming care,10 aided in part by the self-admitted antitransgender bias of the newly hired chair of psychiatry, Dr. Paul McHugh. The 21st century, however, has seen increasing societal acceptance toward TGD individuals, advancement in medical and surgical care, and improved health care access afforded by protective legislation.
These improvements have led to recognition of the need for development of academic transgender health centers that provide multidisciplinary gender-affirming care. One such center is the Johns Hopkins Center for Transgender Health (CTH), which launched in early 2017 with the mission of decreasing health disparities and improving the health of the TGD community. In this article, we share our experience in establishing and maintaining an academic transgender center of excellence in a field where guidelines are rapidly evolving and little reference material is available on program building. It is our hope that other institutions will benefit from our experience, with the ultimate goal of providing high-level care to a greater number of TGD individuals.
Prelaunch Planning
Program development began by defining a centralized mission and justifying the necessity for a center for transgender health to institutional leadership. The planning process began approximately 18 months ahead of the ultimate official launch date. This process involved both online surveys and in-person focus groups held at transgender health conferences, as well as the formation of an executive task force aimed at developing a unified vision for providing effective and efficient patient care. In recognizing the highly multidisciplinary nature of delivery of care to the TGD patient, we realized that the ideal approach was adaptation of the service line concept that has been used in other fields, which also requires multiple disciplines (e.g., solid organ transplant, spine/musculoskeletal, cardiac, vascular services).11 With a centralized service line, patients have 1 point of contact, they are tracked throughout the care process, and the multidepartmental practitioners involved in their care are aligned. In addition, online surveys and in-person focus groups were held at transgender health conferences.
Approximately 1 year ahead of the ultimate launch date, a large, multidisciplinary committee was formed to plan the rollout of the center. This process included clinical leaders, diversity and inclusion representatives, administrators, finance representatives, and hospital executives, who met to define a governance structure. High-level leadership support was crucial, and the hospital CEO/COOs and executive vice dean were involved, with direct reports provided to the dean (who also directs the hospital system). Workgroup meetings were held every 2 weeks for more than 1 year up to the launch date, alternating between the full group and a clinical subcommittee.
The organizational structure that emerged from this planning process was created so that each functional component of the center had a responsible individual or group of individuals (Figure 1). Clinical responsibilities were overseen by surgical, medical, mental health, and pediatric service leaders and ultimately the chief medical director, who was also responsible for research and educational collaboration among departments. The organization structure also included clinical social workers, financial services specialists, access center staff, and diversity and inclusion staff. Oversight of the service line was ultimately via the CTH leadership group, which comprised departmental chairs and hospital executive leadership and was responsible for approving major decisions and ensuring accountability for the implementation of an effective service line.
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Figure 1: The organizational structure of the Johns Hopkins Center for Transgender Health. This structure was created so that each functional component of the center had a responsible individual or group of individuals.
The planning process culminated in the soft center launch in March 2017, when the official website went live and the communication lines were open for patients to access. During this time patient intakes were performed, consultations were scheduled, and patients were seen, allowing optimization of the workflow and process. The official launch date was 3 months later in June 2017, when the center was advertised and an official announcement was made.
Infrastructure
Competency training
TGD individuals historically report adversarial experiences in the health care setting, with high rates of misgendering, refusal of care, and other negative experiences. Many will avoid seeking care because of the fear of being mistreated.12 The creation of an environment of safety and respect is therefore essential. Cultural competency training in transgender health was implemented so that all individuals involved in the patient experience were educated in respecting patient pronouns and names, using culturally appropriate vocabulary, and recognizing challenges the transgender population faces. A short eLearning module (Transgender 101) was created with video narration by the center directors. All departments were encouraged to make the training mandatory. Nursing leadership made it a requirement for all nurses and has included transgender cultural competency training in the nursing residency program. In-person follow-on training was provided optionally for those seeking more information. Targeted training was provided to personnel who worked in hospital areas that saw a high volume of TGD patients (operating room staff and practitioners, inpatient department staff, and intensive care unit staff). Intensive care units included not only cultural competency training but also TGD-specific medical and nursing education.
Systems-based logistics
It is important that the administrative systems facilitate caring for the TGD patient in a respectful way. Infrastructure planning for the launch of the CTH also included changes to the electronic medical record to primarily display the patient’s chosen name and gender identity in the Epic banner rather than their legal name or assigned sex at birth to prevent practitioners from inadvertently misgendering or deadnaming patients. To implement this, a system was created to allow intake practitioners to enter the appropriate information for display. Over time, self-reporting via patient-interactive technology has become the primary mechanism for capturing sexual orientation and gender identity demographic characteristics.
Although perhaps seemingly a small step among all other preparations, these measures proved to be among the most important for the actual patient experience. The Epic changes required extensive usability testing before going live and did not take effect until the center had been active for a number of months. We observed persistent problems with staff misgendering and deadnaming transgender inpatients. After sexual orientation and gender identity information was more prominently displayed in the electronic medical records, complaints related to this issue plummeted immediately. This finding was a persistent theme: the vast majority of medical team members are willing to use correct pronouns and chosen names, but the systems must be in place to support correct patient identification or incidents will be common.
Patient wristbands were also changed to reflect the appropriate name and gender congruent with the patient’s identity because safety checks require repeated verbalization of the name and gender on the wristband. Extensive reporting and data analytics were also built to allow leadership and the staff to understand better the type of services patients were seeking; these data allowed us to focus further centralized support on these areas, improving patient experiences.
Centralized intake, management, and support
Patient intake and care coordination is central to the implementation of an effective service line. The process begins with a central method of contact during which the patient is connected with staff trained to collect medical and social information. Insurance reviews are performed to identify any potential coverage-based barriers to care, and comprehensive intake assessments are conducted by the center social worker or nurse.
The intake conversation serves as the center point for the care of the patient. A comprehensive medical and psychosocial history is collected from the patient and ultimate goals are discussed. Referrals are made to all services that may be involved in care, if necessary. For surgical patients, center staff discuss the need for mental health surgical readiness assessment letters in line with World Professional Association for Transgender Health standards of care. In addition, the social worker evaluates social stability and confirms or arranges for a support system to be in place for the postoperative period. Once insurance requirements and care standards are confirmed, the patient’s care moves forward with consultations and surgery.
The centralized intake process is designed to streamline the patient experience, avoid redundancy, and provide care that is complete. The information collected can be used by specialists throughout the center to inform initial consultations with patients and allows time to be spent on the purpose of the visit rather than collecting background information on gender affirmation history and demographic characteristics.
The same centralized contact initially was used for patient support throughout the center, whether surgical or nonsurgical. As the CTH evolved, the clinical intake screening focused on those patients seeking GAS, whereas patients seeking nonsurgical care were connected with appropriate clinicians. In addition, the team social worker provides support to all patients and is available for mental health or social crises.
The greatest barrier for new practitioners can be challenges with insurance coverage because of burdensome requirements for preauthorization and frequent last-minute denials. Early in the development of the CTH, a dedicated patient financial services coordinator was onboarded to confirm insurance reviews for all surgical patients to ensure that their insurance covers the needed services. In addition, the financial services coordinator submits all preauthorizations for GAS or hormone therapy throughout the center and is available to troubleshoot issues with collections. The coordinator also supports direct patient care by providing support in understanding complicated insurance policies and obtaining additional documentation, including out-of-network agreements.
The complexity of insurance management for these services is unique and cannot be overstated; our center maintained an always-evolving database of more than a dozen insurers, each with seemingly trivial policy variations (e.g., whether a surgical readiness letter can be cosigned by a doctoral-level practitioner or whether it must be authored only by the practitioner) that result in last-minute denial if not understood.
Clinical Services
Surgical services
The surgical components of gender-affirming care most commonly include top surgery (breast augmentation and mastectomy), bottom surgery (phalloplasty, metoidioplasty, and vaginoplasty), and facial gender surgery. Although top surgery is relatively less specialized and resource intensive, bottom surgery and facial gender surgery require equipment and expertise that may not be available without a thoughtfully developed infrastructure and workflow. We purchased a variety of new equipment and developed custom preference cards so all necessary resources were available. We identified a lead center operating room nurse and held frequent training runs with the operating room staff to ensure the workflow was seamless on the day of surgery.
The CTH anesthesia director and chief medical officer worked to create anesthesia protocols rooted in standard anesthesia management and adjusted based on learning from early cases. Best practices were written to determine appropriate pain management, fluid management, length of surgery, and need for specialized monitoring. The best practices are broken into preoperative, intraoperative, and postoperative instructional sections, which has proven invaluable with practitioners new to these cases as well as traveling staff or those providing breaks. Enhanced recovery after surgery pathways were developed to optimize adequate pain control, mobility, and discharge planning. Nursing staff were trained, and regular training sessions were held every few months to account for staff turnover.
Medical and mental health services
TGD patients require comprehensive, gender-affirming primary care. At Johns Hopkins University, the general health and gender-related health needs of TGD patients are cared for by practitioners within both the Department of Internal Medicine and Johns Hopkins Community Physicians (collectively, Johns Hopkins Medicine). CTH primary care practitioners receive referrals through the centralized service line, and all CTH primary care practitioners prescribe gender-affirming hormone therapy under an informed consent model, with the intent of making the primary care setting a 1-stop shop for patients. Medically complex patients or patients with other endocrine needs may be cared for by a CTH endocrinologist.
The patient experience in primary care is not limited to the examination room but rather encompasses many aspects, including completing patient history forms, the greeting and check-in process, and even something as simple as using the restroom while waiting to see one’s practitioner. Intake forms were amended to be inclusive of patients with diverse bodies. Basic staff training was implemented at each CTH primary care practitioner location and at all staff levels. Respectful patient interactions were aided by redesign of the electronic medical record, mentioned above. Attention was paid to the clinic environment to ensure access to gender-neutral restrooms.
The Department of Psychiatry at Johns Hopkins University provides mental health services through a specialized gender and sexuality clinic. Practitioners perform comprehensive mental health evaluation in accordance with the World Professional Association for Transgender Health standards of care for patients who require readiness assessment. Providing ongoing longitudinal therapy and mental health treatment in an academic setting remains a challenging goal because of financial constraints. Insurer limitations on settings where patients can be seen for outpatient behavioral health (i.e., not in a hospital setting) provided further difficulties in creating a model.
Mental health services are also available and essential in the preoperative and postoperative periods. A strong partnership among surgical, medical, and mental health teams is essential to appropriately support patients through their transition. In our center, we employed a licensed clinical social worker to assist patients perioperatively. Gender-affirming voice therapy is provided by speech and language therapists as well as partnered otolaryngologists. Fertility preservation is provided via a partnership with the Johns Hopkins Department of Obstetrics and Gynecology’s fertility center, although insurance coverage for these services is scarce and use is limited.
Children and adolescents
Although at Johns Hopkins University GAS has only been offered to legally adult patients, comprehensive care for many TGD patients may begin in adolescence. Johns Hopkins University offers a comprehensive pediatric gender and sexuality clinic (Emerge Gender and Sexuality Clinic) led by our pediatric and adolescent medicine colleagues, which involves multidisciplinary evaluation and management by pediatrics, psychiatry, and endocrinology practitioners. The services and considerations for this patient population are notably distinct from adults and will be discussed in separate publications by the Emerge Gender and Sexuality Clinic team.
More information about clinical services for TGD patients is given in Supplemental Digital Appendix 1 at https://links.lww.com/ACADMED/B374.
Clinical and Basic Science Research
The mission of the CTH is to decrease health disparities and improve the health of the TGD community. Inherent in this mission is a commitment to expanding the fund of knowledge in the field of gender-affirming care through clinical and basic science research. In a system in which care for the TGD population is fragmented into typical specialty departmental silos, research efforts are duplicative and inefficient. In creating a unified entity to care for the TGD population, we also found an ideal opportunity to centralize research efforts and foster collaboration. Several actions were taken to create an infrastructure that would allow improvement of research efforts.
A prospective institutional review board registry with patient specimen biorepository was created that practitioners of different specialties could contribute to and access. Through maintenance of these databases and standardizing clinical documentation, we can ensure that clinical data are available and easily retrievable. Our clinical research focus includes patient-reported outcome measures, clinical outcomes data, surgical planning and technique, and access to care. In keeping a universal specimen biorepository, researchers from different backgrounds can perform basic science investigations for TGD-specific studies. For example, the authors have a TGD-focused basic science laboratory that explores tissue engineering, mechanisms of scarring, and vascularized composite allotransplantation. A community advisory board was formed to facilitate communication and knowledge sharing among researchers. Perhaps the most important goal in building a center that thrives academically is the creation of a research community with a unified goal of scientific discovery in TGD health care.
Education and Advocacy
Along with clinical care and research, education is 1 of the 3 primary points of focus in the development of the CTH. Academic institutions provide many opportunities to engage with medical trainees, and these opportunities serve a dual purpose. Teaching gender-affirming care to trainees, who will then go to different parts of the world and care for TGD patients, has an impact far greater than we can achieve locally. Exposing trainees to gender-affirming care also creates a pipeline for qualified practitioners; as demand for clinical services increases, the need for practitioner recruitment and clinical capacity expansion is an ongoing concern. The approach to TGD-specific education involved 3 components: focused exposure to TGD patients, dedicated comprehensive training programs, and the integration of TGD health care into standard curricula at the institution.
Focused exposure to TGD patients was provided through collaboration with our internal medicine residency urban health track. We designed a clinical elective for residents who want to learn more about the care of TGD patients. Learners rotate through different specialties and work with clinicians involved in various dimensions of gender-affirming care. Given the limits of medical education about transgender care, practitioners currently in practice may benefit from continuing education on transgender care. A curriculum development project that targets primary care practitioners in practice is currently in progress. In addition, medical students, residents, and fellows at outside institutions who seek TGD health care training are accepted to ad hoc rotations.
A dedicated comprehensive training program was created to provide multidisciplinary training in GAS. The Complex Gender and Microsurgery Fellowship, hosted within the Department of Plastic Surgery, allows a fellow to be trained by practitioners in plastic, urologic, and gynecologic surgery to achieve proficiency in all aspects of a surgical transition. The lack of health care practitioners knowledgeable in TGD individuals and the distance patients have to travel to meet with these practitioners are major barriers to care for TGD individuals.12 The goal of increasing the number of practitioners competent in the care of TGD individuals is an important step in narrowing this access gap.
The most important educational benefit of a unified TGD health care entity is the ability to integrate TGD-specific education into the standard curricula at our institution. The above-described service line and the deconstructing of traditional departmental silos are discussed in the context of improving clinical patient care. This organizational structure also presents an important opportunity to provide trainees with a multidisciplinary education. Medical students as well as medical, surgical, and mental health postgraduate trainees at our institution are subsequently provided with training across different specialties.
As a mission-driven program, advocacy work, both internal and external, is an essential dimension of the center. Through interacting with community partners and colleagues, providing input to the media, and helping to ensure legislation pertaining to TGD issues is grounded in science and best practices, the CTH has worked to address persistent health inequities faced by TGD communities.13,14
Patient Results
The CTH launched in March 2017. A total of 3,045 patients have been served through the centralized contact portal; outside the COVID-related decrease in volume during spring 2020, a consistent number of new patients have sought care each quarter (Figure 2). Of these, 2,878 underwent the full clinical intake process and opted to pursue consultation with a Johns Hopkins Medicine practitioner. The majority of patient encounters are surgical (n = 2,914 [68.3%]); however, the rate of medical encounters increased at a greater rate after the third year of the program (medical encounters n = 172, 204, and 563 vs surgical encounters n = 800, 602, and 708 for 2019, 2020, and 2021, respectively) (Figure 3). The largest portion of these patients comprised individuals in the 18- to 29-year age range (n = 1,404 [48.8%]), followed by those 30 to 45 years of age (n = 997 [34.6%]). The remainder of age groups combined for only 477 (16.6%). The majority of patients identified as either male (n = 907 [31.5%]) or female (n = 806 [28.0%]), whereas fewer identified themselves as transfemale (n = 328 [11.4%]) or transmale (n = 530 [18.4%]). The remainder of patients identified as genderqueer (n = 41 [1.4%]) or nonbinary (n = 266 [9.2%]) (Table 1). The proportion of individuals identifying as nonbinary or genderqueer was highest in those younger than 18 years (n = 24 [17.3%]) followed by the 18- to 29-year age range (186 [13.2%]) and the 30- to 45-year age group (88 [8.8%]). Those 46 years or older rarely identified as nonbinary or genderqueer (< 4.0%). The distribution of procedures is likely not representative of population means because the senior surgeon/corresponding author (D.C.) has a large phalloplasty practice and Johns Hopkins University is one of only a handful of centers that will undertake major secondary phalloplasty revisions. The most commonly performed procedures were chest masculinization (n = 153 [21.3%]), phalloplasty (n = 138 [19.2%]), facial gender surgery (n = 94 [13.1%]), breast augmentation (n = 72 [10.0%]), and vaginoplasty (n = 64 [8.9%]) (Figure 4).
Table 1: Age and Gender Demographic Characteristics of 2,878 Patients at the Johns Hopkins Center for Transgender Health, March 2017–December 2021
Figure 2: Number of patients cared for at the Johns Hopkins Center for Transgender Health since its launch in 2017.
Figure 3: Number of patient encounters at the Johns Hopkins Center for Transgender Health by specialty. Surgical volume plateaued approximately 3 years after launch, whereas subsequent increases in total volume were the result of increasing nonsurgical patients, comprising primary care, internal medicine, and mental health visits.
Figure 4: Operations performed from 2017 to 2021. Phalloplasty (flap) includes primary penile flap creation and major revisions that required total or near-total reconstruction. Phalloplasty (perineal) includes planned staged procedures, such as urethral lengthening, glansplasty, and scrotoplasty, whereas phalloplasty (prosthetic) includes placement of a penile prosthetic and/or testicular implants. Minor revision/forearm graft includes minor outpatient revisions as well as staged skin grafts for phalloplasty donor sites.
Discussion
In this article, we share our experience with the formation and development of the CTH, which has grown to over 3,000 patients since its launch 5 years ago. Interestingly, the surgical volume reached a plateau approximately 3 years after launch, and subsequent increases in total volume were the result of increasing nonsurgical patients, comprising primary care, internal medicine, and mental health visits (Figure 3). The plateau in surgical volume is primarily because the maximum schedule capacity of CTH surgeons was reached rather quickly. Surgical consultations were the initial draw to the program for many patients, and medical and mental health referrals followed after a short lag time.
The largest portion of patients interacting with the CTH were in the 18- to 29-year age range, followed by the 30- to 45-year age range: the 2 groups combined for a patient volume of more than 75%. Patients younger than 18 years comprised less than 6% of our patient volume (Table 1), primarily because gender diverse youth are cared for in a separate functional entity from the CTH (Emerge Gender and Sexuality Clinic). Although patients identifying as nonbinary or genderqueer comprised only 7.4% of patients (Table 1), the greatest portion of these patients were younger than 30 years. Population data corroborate this finding, with a greater portion of younger individuals identifying as nonbinary.12,15 These data predict an increase in volume for this patient population in the upcoming years and a possible shift in the goals and requests from surgery. Our center handles any atypical requests on an individual basis, and the medical and surgical feasibility of individual requests are discussed in monthly multidisciplinary conferences.
A streamlined organizational structure was fundamental to the success of our center. Adoption of the service line concept allowed for a patient-centered experience in which all involved disciplines were seamlessly integrated and the patient could navigate easily among them. Instead of coordinating their own care in a fragmented and siloed system, patients could rely on an integrated unit to take over the referral and navigation process. To implement this system, however, a reliable and accountable patient access point must be formed. At our center, a telephone number connects to a line that is serviced by trained personnel who can direct patients.
In addition to the patient experience, we found that governance and administration must also be centralized to implement a service line model in an effective way. The proper oversight and accountability in our system are created by a health leadership group that includes the department chairs of each of the contributing disciplines in the center. Critically, this group also includes hospital executive leadership (CEO/COO) and finance experts (CFO). Orienting the leadership on a horizontal continuum increases transparency, stimulates collaboration, and shares accountability among departments.11,16 Furthermore, this centralized approach allows for unified planning and assessment of needs.17 Ultimately, a system that is structured around the TGD patient maximizes patient convenience, satisfaction, and care delivery.
Limitations and lessons learned
We encountered a number of challenges in the process of developing our center. One particular challenge was limited models for providing ongoing mental health treatment. We found that the insurance landscape for mental health is such that low reimbursements make it difficult for practitioners to see patients longitudinally and support a viable practice. The ability to provide the necessary services for patients is dependent on the financial viability of the program, which is in turn influenced substantially by insurance reimbursement for procedural services.
Another challenge is waiting lists for surgery, where there continues to be an undeniable bottleneck caused by the scarcity of those properly trained to perform this highly specialized service. The solution to this problem is long term and requires training more practitioners in GAS; this fundamental issue is what drives our commitment to our Complex Gender Surgery Fellowship.
Significant institutional commitment to investing in this patient population is nearly a sine qua non for program success. With high patient volumes, insurance hurdles, and complex care coordination, the center requires significantly more staffing than programs for most other care conditions. The most common reason we observe for new centers failing to thrive appears far more often to be a lack of administrative support rather than inadequate practitioner commitment to TGD care. Two medical practice coordinators, 2 nurses, 1 insurance specialist, and 1 social worker are currently dedicated full time to the CTH. The critical necessity of having internal administrative capacity to provide staff management and efficient operational coordination became increasingly clear as the program developed. As a result, Johns Hopkins Medicine also approved hiring a chief administrative officer for the CTH in 2021.
Conclusions
Transgender medicine is unique in that it has only become possible for most patients to be seen at academic medical centers within the past decade (i.e., insurance changes after implementation of the Patient Protection and Affordable Care Act). Development of unified, multidisciplinary centers is a vital step in accelerating the pace of progress and innovation in this field. A multifaceted planning process that addresses not only medical care but also issues of systems design, care coordination, and cultural competence is essential to maximize chances of success and community acceptance. By sharing our experience in creating and developing a center of excellence, we hope to provide a roadmap for others in expanding health care quality and access for TGD individuals.
References
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