Abstract
Background
Many transgender persons seek hormone therapy to reduce gender dysphoria and improve quality of life, but little is known about patient satisfaction with current gender-affirming hormone therapy.
Aim
To examine patient satisfaction with current gender-affirming hormone therapy and patients’ goals of additional hormone therapy.
Methods
Transgender adults in the validated multicenter STRONG cohort (Study of Transition, Outcomes, and Gender) were asked to complete a cross-sectional survey about current and planned hormone therapy and the effects that they experienced or hoped to gain. The proportion of respondents reporting overall satisfaction with hormone therapy were compared with χ2 or Fisher exact test. Cochran-Mantel-Haenszel analysis was used to compare the covariates of interest while controlling for age at the time of survey completion.
Outcomes
Patient satisfaction across hormone therapies, each measured with a 5-point scale, was averaged and dichotomized.
Results
Out of 2136 eligible transgender adults, 696 (33%) completed the survey: 350 transfeminine (TF) and 346 transmasculine (TM) respondents. Most participants (80%) were satisfied or very satisfied with their current hormone therapies. TF participants and older participants were less likely to report being satisfied with their current hormone therapies than TM participants and younger participants, respectively. However, TM and TF categories were not associated with patient satisfaction after controlling for age at the time of survey completion. More TF persons planned to take additional treatment. The most frequent goals for additional hormone therapy for TF persons included breast size growth, feminine body fat distribution, and facial feature softening; for TM persons, goals included diminishing dysphoria, greater muscle mass, and masculine body fat distribution.
Clinical Implications
Multidisciplinary care beyond provision of hormone therapy—such as involvement of surgical, dermatologic, reproductive health, mental health, and/or gender expression care—may be important to help achieve unmet gender-affirming care goals.
Strengths and Limitations
This study had a modest response rate and included only respondents with private insurance, limiting generalizability.
Conclusion
Understanding patient satisfaction and goals of care will assist shared decision making and counseling in patient-centered gender-affirming therapy.
Keywords: transgender persons, health services for transgender persons, gender-affirming hormone therapy, patient satisfaction
Introduction
Gender-affirming therapy often includes administration of exogenous sex hormones to induce changes in physical appearance consistent with the person’s identity.1,2 Many transgender persons seek hormone therapy to reduce gender dysphoria and improve quality of life.2,3 While hormone therapy is often the first, if not only, medical intervention accessed by transgender individuals, surgical or other interdisciplinary gender-affirming care may be essential to meeting expectations of transgender persons. Though the World Professional Association for Transgender Health (WPATH) and the Endocrine Society recommend individualized treatment for transgender persons, little is known about patient satisfaction with current gender-affirming hormone therapy.1,4 To help patients consider the full range of health services open to them, more knowledge is needed about patient satisfaction and intended goals of hormone therapy. This study aimed to examine patient satisfaction with current gender-affirming hormone therapy and patients’ plans for and goals for additional hormone therapy.
Methods
The data were obtained from a cross-sectional survey of transgender adults nested within the multicenter STRONG cohort (Study of Transition, Outcomes, and Gender). Survey methods were described in detail elsewhere.5 Survey eligibility included age ≥18 years; enrollment in KPNC (Kaiser Permanente Northern California), KPSC (Kaiser Permanente Southern California), or KPGA (Kaiser Permanente Georgia) in 2006 to 2014; at least 1 transgender-specific diagnostic code documented in the health record; and validated transgender status based on the review of clinical notes. Survey participant eligibility consisted of physician consent for contact and self-reported gender identity differing from the sex assigned at birth, subcategorized as transfeminine (TF) or transmasculine (TM).
In the survey, participants were asked, “Are you currently taking medications to change your body to reflect your gender identity?” Participants receiving hormone therapy were then asked to name the specific medication and report how satisfied they were with each medication on a 5-point scale ranging from 1 (very satisfied) to 5 (very unsatisfied) with 3 being neutral. Satisfaction overall was averaged across all reported hormone therapies and recategorized on a 5-point scale. Satisfaction was dichotomized, with any mean score <2.5 indicating “unsatisfied” and with remaining scores classified as “satisfied.”
Participants were also asked, “Are there any other types of medications that you are not currently taking, but plan to take in the future?” Those who planned to take medication in the future, regardless of whether they were currently taking hormone therapy, were asked, “What results or effects do you hope to gain from taking these medications?” Participants missing satisfaction scores were excluded from analysis. There was 1 TF person and 3 TM persons who indicated that they were taking testosterone and estrogen, respectively. A sensitivity analysis excluding these data was performed. The responses to survey questions were summarized by calculating counts and proportions, and their distributions were compared with satisfaction scores via χ2 or Fisher exact test. Cochran-Mantel-Haenszel analysis was used to compare the covariates of interest while controlling for age at the time of survey completion. All analyses were performed in SAS version 9.4 (SAS Institute), with P < .05 considered significant in 2-sided tests. This study was approved by Institutional Review Boards at all participating sites.
Results
The survey response rate was 696 of 2136 (33%): 350 TF and 346 TM participants. Demographic information is presented in Table 1. More TM persons than TF persons were currently receiving hormone therapy (86% vs 79%, P = .007). Hormone regimens reported by TF respondents included 126 (50%) taking estrogen-only therapy, 124 (49%) taking combination therapy (estrogen plus an antiandrogen or progesterone), and 4 (1.6%) taking other combinations. Of TM respondents, 266 (99%) reported taking testosterone and 3 (1.1%) reported taking other combinations.
Table 1.
Characteristics of participants currently taking hormone therapy by hormone satisfaction.
| Participants, No. (%) | |||||
|---|---|---|---|---|---|
| Characteristic | All (n = 523) a | Satisfied (n = 416) | Dissatisfied (n = 107) | P value b | Age-adjusted P value c |
| Gender | .03 | .21 | |||
| Transfeminine | 254 (49) | 192 (46) | 62 (58) | ||
| Transmasculine | 269 (51) | 224 (54) | 45 (42) | ||
| Age, y | .04 | — | |||
| 18-29 | 178 (34) | 153 (37) | 25 (23) | ||
| 30-39 | 119 (23) | 94 (23) | 25 (23) | ||
| 40-54 | 129 (25) | 99 (24) | 30 (28) | ||
| ≥55 | 97 (19) | 70 (17) | 27 (25) | ||
| Race/ethnicity | .86 | .88 | |||
| Non-Hispanic | |||||
| White | 310 (59) | 248 (60) | 62 (58) | ||
| Black | 16 (3.1) | 11 (2.6) | 5 (4.7) | ||
| Asian/Pacific Islander | 40 (7.7) | 31 (7.5) | 9 (8.4) | ||
| Hispanic | 101 (19) | 81 (19) | 20 (19) | ||
| Mixed, other, or unknown | 56 (11) | 45 (11) | 11 (10) | ||
| Education | .82 | .31 | |||
| High school graduate or less | 64 (12) | 49 (12) | 15 (14) | ||
| Some college, associate, or technical school | 186 (36) | 149 (36) | 37 (34) | ||
| College graduate or greater | 273 (52) | 218 (52) | 55 (51) | ||
| Household income, $ | .52 | .46 | |||
| <25 000 | 103 (20) | 85 (20) | 18 (17) | ||
| 25 000-49 000 | 109 (21) | 88 (21) | 21 (20) | ||
| 50 000-74 999 | 89 (17) | 67 (16) | 22 (10) | ||
| 75 000-99 999 | 74 (14) | 63 (15) | 11 (10) | ||
| >100 000 | 102 (20) | 79 (19) | 23 (22) | ||
| Prefer not to say, unsure, missing | 46 (8.8) | 34 (8.2) | 12 (11) | ||
| Age at hormone therapy initiation, y | .69 | .78 | |||
| ≤21 | 131 (27) | 108 (28) | 23 (23) | ||
| 22-27 | 116 (24) | 94 (24) | 22 (22) | ||
| 28-39 | 120 (25) | 93 (24) | 27 (28) | ||
| ≥40 | 115 (24) | 89 (23) | 26 (27) | ||
| Gender-affirming surgical history | .21 | .35 | |||
| No previous surgery | 190 (36) | 147 (35) | 43 (40) | ||
| Chest surgery without genital surgery | 140 (27) | 117 (28) | 23 (22) | ||
| Genital surgery without vaginoplasty or phalloplasty | 67 (13) | 57 (14) | 10 (9.4) | ||
| Genital surgery with vaginoplasty or phalloplasty | 126 (24) | 95 (23) | 31 (29) | ||
| Plan to take additional medications in the future | .49 | .32 | |||
| No/unsure | 478 (91) | 382 (92) | 96 (90) | ||
| Yes | 45 (8.6) | 34 (8.2) | 11 (10) | ||
Participants without hormone satisfaction scores were excluded (n = 49).
Results from chi-square or Fisher exact test.
Results from Cochran-Mantel-Haenszel test.
On average, participants were satisfied with their current hormone therapies, with 210 (40%) reporting that they were very satisfied, 206 (39%) satisfied, 47 (9.0%) neutral, 15 (2.9%) dissatisfied, and 45 (8.6%) very dissatisfied. TF persons were less likely than TM survey respondents to report being satisfied with their current hormone therapy (46% vs 54%, P = .03). Additionally, participants >55 years old were less likely to be satisfied than participants aged 18 to 29 years (37% vs 17%, P = .04). Notably, TF respondents to this survey were significantly older than TM respondents (P < .01). After adjusting for age at the time of survey completion, no covariates were significantly associated with satisfaction. The proportion of TF respondents who reported being satisfied did not differ between those taking estrogen-only therapy and those taking combination therapy (estrogen plus an antiandrogen or progesterone; 51% vs 48%, P = .27). Results of the sensitivity analysis were similar to our primary analysis (data not shown).
Out of all respondents, 36 (10%) TF and 24 (7%) TM respondents planned to take additional hormone therapy, and among those, 75% indicated that they would like to do it “as soon as possible” or “within the next year”. Among the 60 participants who planned to take additional hormonal therapy, 14 (23%) were not currently taking hormone therapy but had taken hormones in the past; 39 (65%) reported no gender-affirming surgery; and 21 (35%) reported at least 1 gender-affirming operation. Moreover, 16 (44%) TF respondents planned to take estrogens, 17 (47%) progesterone, 2 (5.6%) antiandrogens, and 7 (19%) were unsure about which future medications they wanted to take. Overall 12 (50%) TM respondents indicated that they wanted to take testosterone, while 6 (25%) stated that they were unsure which medications they wanted to take in the future.
The top 5 goals of additional hormone therapy for TF persons included breast size growth (81%), redistribution of body fat (69%), softening of facial features (69%), softer skin (64%), and reduction in body hair (53%). The top 5 goals for TM persons included diminishing dysphoria (46%), increasing muscle mass (42%), redistribution of body fat (42%), voice changes (33%), and stopping menstruation (30%; Table 2).
Table 2.
Goals of future hormone therapy.a
| Respondents, No. (%) | ||||
|---|---|---|---|---|
| Characteristic | All | Transmasculine | Transfeminine | P value |
| Total | 60 (100) | 24 (40) | 36 (60) | |
| Breast size change | 32 (53) | 3 (13) | 29 (81) | <.0001 |
| Body hair change | 25 (42) | 6 (25) | 19 (53) | .03 |
| Redistribution of body fat | 35 (58) | 10 (42) | 25 (69) | .03 |
| Skin texture change | 23 (38) | 0 (0) | 23 (64) | <.0001 |
| Voice change | 15 (25) | 8 (33) | 7 (19) | .22 |
| Facial feature change | 30 (50) | 5 (21) | 25 (69) | .0002 |
| Muscle mass change | 15 (25) | 10 (42) | 5 (14) | .01 |
| Stop menstruation | — | 7 (30) | — | — |
| Stimulate exact female hormone cycle | — | — | 17 (47) | — |
| Infertility | 3 (5.0) | 1 (4.2) | 2 (5.6) | .81 |
| Emotional changes | 14 (23) | 2 (8.3) | 12 (33) | .02 |
| Diminish dysphoria | 27 (45) | 11 (46) | 16 (44) | .92 |
| Increase confidence | 22 (37) | 5 (21) | 17 (47) | .04 |
| Other | 16 (27) | 10 (42) | 6 (17) | .03 |
Dashes (—) indicate not applicable.
Discussion
In this study, patient satisfaction with hormone therapy, on average, was high. Satisfaction with current hormone therapy differed between TM and TF participants, with more TF persons reporting lower satisfaction and more plans for additional hormone therapy to achieve gender-affirming goals. Additionally, differences in satisfaction with current hormone therapy were appreciated between younger and older participants. However, none of these factors were significantly associated with satisfaction after controlling for age at the time of survey completion. These results indicate the challenges in predicting patient satisfaction with hormone therapy and point to the need for comprehensive and patient-focused gender-affirming services.
Patient satisfaction is a commonly used indicator for measuring health care quality. Satisfaction with medications, a specific patient-reported outcome, can be defined as the patient’s evaluation of the process of taking a medication and the associated outcomes. Medication satisfaction has been shown to help predict adherence and is closely related to perceived treatment effectiveness.6 While several studies have addressed patient satisfaction with transgender health services and surgery, to our knowledge, this is the first study that addresses transgender patient satisfaction with hormone therapies.7,8 We found that after controlling for age at the time of survey completion, no reported factors were significantly associated with satisfaction with hormone therapies. These results emphasize the standard of care for transgender people that calls for gender-affirming care to be individualized to patient goals and preferences. Response to hormone therapy depends on the dose, route of administration, blood sex hormone concentration, and medication type, making patient satisfaction an important tool for personalizing gender-affirming hormone therapy.1,4 Furthermore, provider counseling on time course and effects of hormone therapy could better align the patient satisfaction scores with the changes expected from hormone therapy.
Current guidelines recommend medical therapy, surgery, and other gender-affirming options. Importantly, patient expectations for degree and rate of physical changes may not be possible to meet with hormone therapy alone.1,4 Multidisciplinary care for transgender patients will likely include various additional services and specialties to meet patient goals. In this study 33% of TM persons who desired additional hormone therapy had goals to change their voices. Voice masculinization is of central importance to TM persons, though changes from hormone therapy alone may not be sufficient. These patients may be candidates for voice and communication treatment, which can contribute to the development of vocal characteristics and nonverbal communication patterns to facilitate comfort with their gender identities.9 Stopping menstruation was also a top goal for TM participants in this study. Reproductive health services for TM persons are essential and may aid in meeting reproductive health goals relating to fertility, pregnancy, menstruation, as well as cancer prevention.10-12
Most TF participants who desired additional hormonal therapy indicated that softening facial features, softer skin, and reduction in body hair were top goals for care. Dermatology and facial plastic surgeons can provide options for those seeking changes beyond what hormone therapy can offer. Dermatologists can provide nonsurgical options, such as neuromodulation, soft tissue augmentation, hair removal services, hair transplants, and other skin care treatments. Facial plastic surgeons may perform feminization or masculinization surgery to help patients achieve their goals.13-15 Other gender-affirming services, such as mental health and/or gender expression care, may provide important benefits to patients and supplement care already received.
To meet patient goals for care, multidisciplinary care will be essential, and the delivery of these services may also require a multidisciplinary approach. WPATH standards of care recognize the need for the involvement of professionals from different disciplines through consultations and referrals.1 However, few coordinated and multidisciplinary models of care for transgender people have been discussed in the literature. Notable models include Fenway Health (Boston, USA) and the TRANS Pulse project (Ontario, Canada). A prior literature review discussed 3 consistent themes after review of these models and found that the following were essential for their success: (1) leadership by the transgender community, (2) multidisciplinary services to ensure comprehensive care, and (3) partnerships to improve service delivery to ensure multidisciplinary care provision.16 WPATH recommends that care models be adapted to the specific setting while considering the resources available. For example, in underresourced settings, individual care providers may create a network to facilitate transgender care.1 Exploring models of service provision for multidisciplinary transgender care will be important to maximize availability of comprehensive care.
Our study is limited by a modest response rate of 33%, though it exceeds that of other major transgender surveys, such as TransPop, which recorded rates of 28.7% and 30.3% in its first and second recruitment periods, respectively.17 We did not have demographic information about the nonresponders to address whether this response rate potentially led to bias. Other limitations include the lack of sex hormone blood concentrations, as well as the private insurance status of participants, which may limit generalizability of the findings and fail to represent the transgender population in the United States. Only those who indicated a desire to take additional medications were asked about their specific goals for these future medications. Further research should also address goals of current hormone therapy.
Conclusion
In this study, most participants were satisfied with their current hormone therapy. However, some patients indicated that they wanted additional therapy to achieve their goals. Understanding patient satisfaction, goals, and plans for future hormone therapy is needed to guide shared decision making and counseling in patient-centered gender-affirming care. Multidisciplinary care beyond provision of hormone therapy, such as involvement of surgical, dermatologic, reproductive health, mental health, and/or gender expression care, may be important to help achieve unmet gender-affirming care goals.
Acknowledgments
Conceptualization: M.G., H.Y. Methodology: M.S., H.Y. Formal analysis: M.S., H.Y. Resources: H.Y. Data curation: M.S., M.G., H.Y. Writing–original draft: M.S., H.Y. Writing–review and editing: M.S., D.G., M.J.S., V.T., M.G., H.Y. Supervision: D.G., M.J.S., V.T., M.G., H.Y. Funding acquisition: M.G., H.Y.
Contributor Information
Meron Siira, Department of Dermatology, School of Medicine, Emory University, Atlanta, GA 30322.
Darios Getahun, Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, CA 91101, United States; Department of Health Systems Science, Kaiser Permanente Bernard J. Tyson School of Medicine, Pasadena, CA 91101, United States.
Michael J Silverberg, Department of Health Systems Science, Kaiser Permanente Bernard J. Tyson School of Medicine, Pasadena, CA 91101, United States; Division of Research, Kaiser Permanente Northern California, Oakland, CA 94612, United States.
Vin Tangpricha, Division of Endocrinology, Metabolism, and Lipids, Department of Medicine, School of Medicine, Emory University, Atlanta, GA 30322.
Michael Goodman, Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, GA 30322.
Howa Yeung, Department of Dermatology, School of Medicine, Emory University, Atlanta, GA 30322.
Funding
This study was funded in part by the Patient-Centered Outcomes Research Institute (contract AD-12-11-4532) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (grant R21HD076387; M.G.).
Conflicts of interest: None declared.
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