Transgender Care Experiences, Barriers, and Recommendations for Improvement in a Large Integrated Health Care System in the United States

Abstract

Purpose:

Transgender individuals who pursue gender affirmation medical procedures often need to navigate a complex health system and interact with multiple health care providers in primary and specialty care. We sought to better understand patient, provider, and system level barriers to transgender care in a large integrated health care system in California.

Methods:

Three 90-min focus groups were conducted with 13 transgender individuals who received specialty care between April and August 2018 in Kaiser Permanente Southern California.

Results:

Participants cited common adversities such as misgendering and system-wide insensitivity during health care encounters and low levels of understanding of their transgender experience among primary care providers. Provider–patient relationship improvements were recommended for pre- and postsurgical care and service-provider sensitivity training. Suggestions include better care coordination, reducing redundancy in clearance for specialty care services, and enhancing patient support for navigation of gender affirmation services. Participants requested careful consideration when implementing systemwide routine processes such as using pronouns and names when calling patients in for visits or describing procedures on service invoices.

Conclusions:

Education and training programs for improving transgender care competency and enhancing care coordination between primary care and specialty care for transgender patients are warranted. Including transgender voices with lived-experience as active stakeholders in ongoing efforts such as community advisory boards to identify care gaps may facilitate patient-centered and culturally sensitive transgender care and increased patient satisfaction.

Policy Implications:

There is a need for systematic training for transgender care competent providers and enhancement of care coordination between primary care and specialty care.

Introduction

Individuals who identify as transgender often encounter a lengthy process if they choose to begin a gender affirmation journey. Steps can include a shift in pronouns, name or legal name change, and altering one's appearance.^1,2 Several health professional organizations including the American Medical Association, American Psychiatric Association, American College of Physicians, and American Psychological Association support the position that U.S. health insurance companies provide coverage for these medically necessary transgender health care services.^3–7 Despite these recommendations and established standards of care,⁸ health care for transgender people is often highly variable and inadequate.⁹

Transgender people who cannot access needed health care, because of poverty, insurance exclusions, or other discrimination, have high unemployment rates and experience disproportional risk of depression/suicide, intimate partner violence, substance abuse, and HIV.^10–14 Transgender women have greater odds (34.21) of living with HIV than other adults¹⁵ and are nine times more likely than the U.S. population to attempt suicide.^16,17

Insensitive and discriminatory treatment has been documented for gender minority individuals seeking routine health care and stigmatization and marginalization for those seeking gender affirmation health services.^2,9 Studies indicate verbal or physical mistreatment of transgender patients as common and significantly associated with patients' avoidance of care for both acute conditions and routine preventive care.^1,18

To better understand experiences of transgender and gender diverse (TGGD) individuals in a large, integrated health care system, we examined patients' experience seeking general medical and transgender care services, examined their unmet needs and barriers to care, and solicited recommendations for overcoming identified care gaps.

Methods

Kaiser Permanente Southern California (KPSC) is a large integrated health care system providing comprehensive care to more than 4.7 million members through prepaid health plans. KPSC offers primary and specialty care to over 10,000 transgender members, including hormone therapy and an array of gender-affirming procedures and surgeries, for example, mastectomy, facial feminization, orchiectomy, and vaginoplasty performed by about 50 surgeons throughout the region.

A purposive sample of adult health plan members (age 18+) received transgender care at KPSC between April and August 2018 and were invited to participate in one of three focus groups with three to five peers per group.¹⁹ Potential study participants were identified by the KPSC LGBTQ Physician Ally Group, physician champions for lesbian, gay, bisexual, transgender, and queer (LGBTQ) care. Informed consents were obtained, and focus groups were led by trained staff, conducted in English, lasting ∼90 min. A semi-structured focus group guide provided a roadmap for discussion informed by the literature on the study of care experiences by LGBTQ populations. Primary domains explored included (1) routine general health and transgender care experiences in the health care system, (2) care experiences during the gender transition process, (3) patient satisfaction with transgender care and unmet needs, (4) recommendations for addressing unmet needs and care gaps at the patient, provider, and health system level. The focus groups were audio-recorded and transcribed verbatim by a professional transcription service. Enrollment was stopped after consistent themes were found in the focus group discussions indicating data saturation.^20,21 Study protocol and informed consent procedures were reviewed and approved by the KPSC Institutional Review Board.

Analysis

Transcribed audio-recorded focus groups were loaded into ATLAS.ti software (version 8) for analysis. We used a thematic analysis approach to analyze and contextualize the qualitative data. The focus group guides were first coded to capture a priori codes linked directly to the central research questions. Both coders used this initial codebook to independently assign coding categories to the three focus group transcripts. Each coder also created new codes (e.g., emergent codes) capturing additional primary, secondary, and tertiary themes interpreted from the narrative text.

Coding processes were discussed and reconciled by the coders as they met repeatedly during this process, resulting in iterative reflection and repeated refinement to achieve consensus. Coders later shared their analytic memos and reflections. In the final stages, the team created a thematic summary organized into a hierarchy of domains, themes, and sub-themes.

Results

Thirteen TGGD persons (four transgender men, eight transgender women, and one gender diverse individual) were recruited in three focus groups conducted in a private research setting (Table 1). Participants identified factors that adversely affected their care experience across the spectrum and provided recommendations for improvement (Supplementary Table S1).

Table 1.

Characteristics of Focus Group Participants

Focus group	Age	Race	Patient type	Datea
1	36	Hispanic/Latino	FTM	2012
1	20	Hispanic/Latino	FTM	2014
1	23	Hispanic/Latino	FTM	2017
1	22	Hispanic/Latino	FTM	2017
1	69	White	Blank	2017
2	44	White	MTF	2016
2	52	Other	MTF	2014
2	70	White	MTF	2014
3	68	White	MTF	2011
3	33	White	MTF	2014
3	55	White	MTF	2014
3	33	Hispanic/Latino	MTF	2014
3	30	Other	MTF	2018

^a Year entered into Kaiser Permanente Southern California transgender care patient database.

FTM, female to male transition; MTF, male to female transition.

Providers often overlook the identity preferences of transgender patients

Participants shared numerous experiences in which physicians, nurses, reception staff and back-office staff, and allied health professionals often used pronouns that mis-gender them, sometimes even after repeated attempts by transgender individuals to clarify their pronoun preference. One participant described visiting a clinic every week to receive a hormone shot:

“There's only been one time that they said [my name], and I've been going there…almost four months.”

These repeated instances create discomfort and a sense of judgement for participants, and several described the psychological burden of these interactions as they grapple with the choice to either correct and educate providers and staff or ignore the misgendering. One participant expressed their frustration:

“…every single month [I have an appointment], I'm obviously there for trans-specific healthcare. They're aware that I go. Like, it's just constant judgment. I'm just like whatever. I'm just going to get through this as quick as possible and go home. I'm not going to make a fuss about it.”

Patient–provider interactions during transition process

Some participants highlighted positive experiences with their primary care physicians (PCPs) during their transition process; however, many also described challenges with their clinicians. Some found their initial interactions with new PCPs to be lacking due to provider inexperience or lack of education, one individual explained:

“…I just go there for my checkup and I don't really care that much that he misgenders me because he's five blocks away and it's convenient. I can walk there so I just tolerate him.”

Most individuals described their PCPs as well-intentioned, but at the front end of a learning curve that put participants in the position of having to educate their own doctors:

“Two weeks later I got transferred to the other doctor because I was like, ‘The doctor you first gave me hasn't got a clue but he's like, this'll be a learning experience for me, and we'll go through this together.’ I'm like, I don't do that.”

Furthermore, participants found that their PCPs often didn't know what to do or how to follow up when confronted with a question they couldn't answer related to their transgender care:

“…listen to what we're saying and not just try to spit out a textbook answer right off the bat. That would make things a lot better.”

Several patients reported having to switch from their “clueless” physicians to providers they could trust and had more knowledge and awareness about their unique needs. PCPs are viewed as gatekeepers to necessary services and procedures who are often ill-prepared or equipped to meet their needs as transgender patients:

“I did not [discuss my transition with my PCP], unless it pertains to something I need, like another surgery or something I need to get his clearance for.”

Normative workflow and terminology can be insensitive to transgender needs

Some aspects of common workflow procedures and terminology were perceived as offensive to focus group participants. For example, one transgender man recalled a recent visit to the obstetrician-gynecology department:

“I went for a pelvic [exam]…and that was uncomfortable because I went by myself. You're in the waiting room with…pregnant women, and then they call you in the back …so that you get the stares. Because you could be waiting for your wife, but then they call your name and you go back there and it's like, you know [the other patients are confused… because I'm a man]. And then the nurse…she was just going to take my vitals and then send me back out there, and I was like, ‘I would really prefer not to go back out there. I'll wait wherever—in the restroom.’”

Another participant was upset when she received a bill for a recent procedure:

“… paid the surgeon for my—what was it?—my artificial vagina… It really pissed me off. That was worse than “all gender” restrooms…How they worded it…Artificial vagina.”

Participants raised their concern that certain plastic surgery procedure requests, such as breast implant size, are denied on the basis that they are purely “cosmetic” personal preferences. During this exchange, a participant offered an alternative explanation for why some transgender individuals may desire larger breast implants:

“They're forgetting one of the purposes of breast implants. I've read… transwomen usually get implants that result in breasts bigger than what's normal for their body mass or configuration. … because breasts are camouflage, and that makes it more difficult for us to be identified as ex-men. It makes it easier for us socially. It's not a sexual perversion. It's a form of defense.”

Lack of care coordination and continuity for transgender services and procedures

For many participants, their care teams' uncertainty and lack of knowledge resulted in appointment or procedure delays because providers were unsure where to refer or direct them appropriately:

“…the mental healthcare therapist, she didn't even know who to refer me to….”

One individual told a story about starting hormone therapy and being sent to Urgent Care:

“…for some reason. And when I went there, they were like, why do you have this, and what is this? …And then they just kept sending me around, and none of them knew where to send me.”

Many reported relying on their own self-advocacy to fill gaps in care, including researching information about services and procedures themselves and/or networking with transgender friends and peers. They described feeling the burden of responsibility to ask questions, pursue issues, and ask for accommodation that the health system providers do not proactively address:

“… finding people when I need really specific trans things to have happen, I've really felt like I've had to navigate that myself… not everybody knows somebody to help guide them through. And now I'm hooked into the surgery team and…I feel very confident in that department…but before them, it would have been kind of nice to have somebody who can point me in the right direction.”

Variability in the availability and perceived quality of transgender care across the organization's medical centers creates inconvenience and/or service limitations.

“…my primary care physician in [Medical Center A] told me yes, they're going to be more aware of what's going on over there [at Medical Center B]; they're more educated on what to do over there…they have more trans patients going over there…See, that's good and all, but I can't be driving all the way to [city] every single time I need something done.”

Hormone therapy experience

Concerns about hormone therapy were not widespread, but a few participants did mention injection anxiety, concern about potential long-term effects of hormone therapy, and conflicting information from their physicians regarding appropriate targets for hormone levels.

Transgender surgery experience

Participants were satisfied overall with their surgery outcomes. However, they explained that many surgeries require follow-up procedures to repair or refine; in these instances, participants expressed less satisfaction resulting from scheduling delays and additional approval requirements. Most participants report going through a cumbersome and, often perceived as unnecessary, level of presurgery requirements to show they are fit to undergo surgical procedures (i.e., obtain clearance from a therapist or attend a support group a specific number of times; fulfill seemingly arbitrary waiting periods). Numerous participants describe this repeated approval process as monotonous and frustrating:

“I think they're pretty good at [Institution], but then again, the wait times on revisions are too long…I kind of gave up on getting quick responses…”

“I don't like the roadblocks or having to repeat the same thing over again when I've already gotten approval on it.”

“[It is] so much gatekeeping. It shouldn't have to be that way… why does it need to be a long process?”

Overall, members are reasonably satisfied with their interactions with therapists, but do see this as a frustrating part of the clearance required for procedures/surgeries:

“I need to go back. Need a [surgery] revision because it's not quite right yet…it's monotonous that I have to keep going back to the shrink and… it's a waste of time.”

In addition, some individuals perceive that their therapists display a reductionist view of their transgender patients during sessions and pointed out that not every concern or feeling of anxiety they experience is directly related to their transition:

“…that's the only thing the therapist or professional wants to talk about [my transgender issues]. It's like, that's not my deal…I'm just anxious; it has nothing to do with that.”

Suggested areas for improvement/intervention

To help address the identified care gaps and areas for improvement in primary and specialty care settings, participants proposed recommendations to enhance the access, delivery, and the quality of transgender health care at patient-, provider-, and system-levels (Table 2).

Table 2.

Recommendations for Transgender Health Care Improvement at the Patient-, Provider-, and System-Level

Patient-level recommendations

• Improve patient understanding of covered/not covered procedures and services

• Develop patient-facing newsletters providing information related to transgender care

• Offer more specialized education and services broken out for individuals with different transition paths (e.g., transfeminine, transmasculine, and gender diverse) as they have different concerns and needs that are difficult to address in support groups that are mixed

• Institute a speakers panel or peer support/health care navigator program where postoperative patients can serve as advocates and a resource for preoperative and immediately postoperative patients

Provider-level recommendations

• Deliver sensitivity training targeting front and backend staff, physicians, allied health workers, including clinical care teams in Emergency and Urgent Care Departments

• Deliver sensitivity training targeting mental health therapists counseling transgender patients

• Educate physicians about the long-term effects of hormone therapy

• Train physicians on cultural sensitivity in patient-provider communication to include transgender and gender diverse individuals

System-level recommendations

• Consider ways to emphasize or flag patients' pronouns in electronic medical record to assist front and back-end clinical staff (to avoid misgendering patients)

• Make the screening and preparation process for surgery more individualized; reduce preoperative and revision surgery approval redundancy wherever possible

• Improve transgender health care coordination, including more streamlined and formalized mechanisms for information sharing across departments and generalists/specialists

• Allow surgeons to provide preoperative patients pictures of prior surgical procedures (to offer surgical candidates examples of their surgical work to help them better prepare and manage expectations)

• Improve quality and standardization for transgender health services and care across different medical centers

• Improve access (shorten wait times) for preoperative mental health assessment

Discussion

We identified provider and system level barriers to both primary and transgender specific care among insured TGGD patients in a large integrated health system. It has been documented that gender minority individuals receive health care that often falls short of common expectations of respectful and equitable treatment for all.^1,2,9 Some may avoid health care due to mistreatment or are reluctant to seek routine care treatment because of their TGGD identification.

A meta-analysis found that half of the transgender women had no health insurance and a third of them obtained their hormones from nonmedical sources.^22,23 While individuals in our study did express gratitude for the ability to have some of their transgender care services covered by health insurance, many felt frustrated by lack of clarity regarding covered services and steps and procedures to obtain care. Furthermore, many felt it was challenging to navigate gender affirmation services by themselves. Radix et al. reported that even those with health insurance have difficulty finding sensitive, affordable care and report seeking gender-related surgeries abroad.⁷

Misgendering individuals or failing to use names and pronouns in public places, such as waiting rooms and patient check-in areas, may cause psychological distress and burden on TGGD persons, potentially leading to resentment and/or avoidance of routine medical and preventive care.^1,18 Our participants suggested sensitivity training and prominent placement on the electronic medical record of names and pronouns or a reminder flag upon check-in for all clinical staff to view.

Other important recommendations targeted the clearance process, wait time, and standardization for certain transgender procedures. Many participants considered the mental health clearance process and policies around feminization procedures to not adequately consider the desires and needs of the TGGD individuals receiving care. For example, one participant felt the approach to breast augmentation should be a cooperative decision between the patient and an empathetic surgeon, not dictated by a bodyweight measure defined for cisgender women.

These findings highlight the importance of re-evaluating current guidelines and developing patient-centered criteria for services²⁴ to better meet the needs and optimize outcomes for transgender individuals while enhancing patient-provider communications surrounding those issues.

This study has several limitations. We were only able to reach a small number of transgender patients who received gender affirming care using study flyers distributed by the transgender care providers and through provider referrals at the time of the study. We also acknowledge a lack of Black transgender women in this work and suggest future researchers reach out specifically to this group who are disproportionately affected by disparities in care and poorer outcomes.

Therefore, these study findings may not be generalizable to transgender patients who are less connected, willing, or able to navigate the health care system. We purposively recruited diverse participants based on their age and gender status and have identified consistent themes from participants across different age, gender, and race/ethnicity groups in our sample.

One potential for conducting future epidemiologic or clinical research among greater numbers of the TGGD population in our health system is a transgender patient registry developed in 2017 that has identified over 10,000 transgender health plan enrollees in the past 4 years. This patient registry offers a great opportunity to expand on the current research and inform policy to improve delivery of care for TGGD individuals.

The stories we heard in this study were self-reported and some of those may have been anecdotes or heard from a “friend” or “acquaintance.” These accounts are unverifiable, but the themes and similar examples of barriers to care and mistreatment are also found in TGGD national surveys.^11,16 Finally, our focus groups were conducted in a clinical research setting by research staff. The participants were informed that their participation was voluntary, and protocols are in place to protect their confidentiality.

Participants may have felt less comfortable sharing their personal experiences or may not have been as open in sharing their attitudes with peers in a group setting. However, our findings are supported by previous reports and evidence of TGGD individuals' marginalization and needs for improved services.^13,14

Work toward greater care coordination at KPSC is underway via use of several nurse case coordinators providing guidance throughout the gender affirmation process, though efforts to raise awareness of these offerings to TGGD members remains an area for improvement.

We emphasize the value of gathering stakeholder perspectives proactively in program development and inclusion of the voices of those with lived experience throughout the process. Future TGGD care quality initiatives can benefit from an ongoing forum such as a community advisory board to identify care gaps based on patients' care experiences and voices of the patients themselves. Several participants in our study expressed their willingness to help their peers by participating in a stakeholder panel, peer support forums, or giving consent to show their pre- and postoperative surgery photos to prospective surgical patients.

Conclusions

Our findings suggest that training programs for improving transgender care competency are warranted and efforts in enhancing care coordination between primary and specialty care may have great potential to improve patient experience and satisfaction. Health system providers are called to work toward greater care coordination that does not exclude or isolate transgender individuals and instead includes and invites them to participate in a patient-centered, respectful process of integrated health care.

Abbreviations Used

EMR

electronic medical record

FTM

female to male transition

KPSC

Kaiser Permanente Southern California

LGBTQ

lesbian, gay, bisexual, transgender, and queer

MTF

male to female transition

PCPs

primary care physicians

TGGD

transgender and gender diverse

Authors' Contributions

The authors confirm that this is entirely original work and that all authors contributed to the writing and review of the article. D.S.L.G. and R.C.H. developed the study concept, design, article writing, editing, and review. C.M.-P., J.M.C., and B.I.A. all contributed to the execution of the qualitative study analysis, development of code book, article writing, review, and analysis. B.I.A. facilitated participant recruitment and focus groups.

Author Disclosure Statement

The authors are all employees of the Southern California Permanente Southern California, Department of Research and Evaluation.

Funding Information

This study was funded by the Kaiser Permanente Garfield Memorial Fund.

Supplementary Material

Supplementary Table S1

Cite this article as: Ling Grant DS, Munoz-Plaza C, Chang JM, Amundsen BI, Hechter RC (2023) Transgender care experiences, barriers, and recommendations for improvement in a large integrated health care system in the United States, Transgender Health 8:5, 437–443, DOI: 10.1089/trgh.2021.0181.