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Breast: Original Articles

Quantifying the Psychosocial Benefits of Masculinizing Mastectomy in Trans Male Patients with Patient-Reported Outcomes: The University of California, San Francisco, Gender Quality of Life Survey

Alcon, Andre M.D.; Kennedy, Adrienne M.S.; Wang, Eric M.D.; Piper, Merisa M.D.; Loeliger, Kelsey M.D., Ph.D.; Admassu, Natnaelle B.A.; Lentz, Rachel M.D.; Kim, Esther A. M.D.

Author Information
Plastic and Reconstructive Surgery: May 2021 - Volume 147 - Issue 5 - p 731e-740e
doi: 10.1097/PRS.0000000000007883

Abstract

Gender-affirming surgery can help transgender patients suffering from gender dysphoria feel more at ease with their bodies and has been associated with decreasing the rates of mental health disorders and improving psychosocial functioning.1–7 Weigert et al. administered the BREAST-Q, a patient-reported outcomes tool designed for cisgender female patients undergoing breast reconstruction, and found a significant improvement in quality of life 4 months after surgery.8 Although these data are promising, the instrument was designed for cisgender individuals and thus does not capture concerns specific to transgender patients. This includes the functional and psychosocial difficulties relating to gender dysphoria.

In fact, most studies examining quality of life after gender-affirming surgery use generic patient-reported outcomes measures designed and validated in cisgender populations or rely on questionnaires with no formal validation process.1–7,9 A systematic review of the literature notes that although gender-affirming surgery appears to be effective, there is a lack of reliable, responsive, and validated instruments specific to transgender patients.9,10 Therefore, the development of a validated survey to accurately measure patient-reported outcomes is critical to understanding the impact of gender-affirming surgery. The objective of this study was to construct a survey for trans male patients undergoing chest surgery and to test it prospectively by administering it to patients before and after gender-affirming surgery.

PATIENTS AND METHODS

Survey Development

This study was conducted in accordance with University of California Institutional Review Board approval (no. 14-14439). Informed written consent was obtained from all participants, including interview and survey subjects. We used consensus principles and a sequential mixed-methods study design to develop and validate a patient-reported outcomes instrument to assess quality of life and patient satisfaction related to chest surgery.11–15 The subject population was chosen for quantity of eligible patients willing to enroll for study procedures and ability to participate in follow-up care.

Conceptual Framework

In a systematic review of available patient-reported outcomes measures following gender-affirming surgery, Barone et al. found that the instruments reviewed were lacking in diagnosis- and surgery-specific content and in rigor in adhering to established patient-reported outcomes development and validation standards.1 In their view, a comprehensive quality-of-life survey specific to gender-affirming surgery should incorporate assessment of self-perception, psychosocial health, physical health, and satisfaction with cosmetic outcomes.1 Using concepts and themes identified in this literature review, we developed a preliminary interview guide.

Next, we identified a sample of transmen who already had or desired gender-affirming mastectomy at two regional transgender surgery clinics in San Francisco and conducted semistructured 30- to 60-minute clinical interviews to elicit key concepts and experiences important to these patients before and after surgery. This interview sample was representative of our surgical population, which is demographically diverse with regard to age, ethnicity, socioeconomic status, education, and presurgical versus postsurgical status. The interviews were recorded, transcribed, and coded for qualitative analysis to identify common concepts and themes. Our interview guide was adapted to include new concepts as they were identified in the qualitative analysis.

Item Generation and Preliminary Scale Formation

Based on concepts identified in interviews and previously identified in the literature,1 a comprehensive list of potential survey items was generated. These items were organized into a framework of eight key domains: gender dysphoria, gender attribution, social integration, participation in activity and employment, freedom from persecution or discrimination, financial barriers, provider competence, and physical health and recovery. The item list was used to create question items, with responses based on a five-point Likert scale ranging from “strongly disagree” to “strongly agree.”

Scale Refinement and Pretesting

A focus group of transgender health allied professionals including surgeons, social workers, primary care physicians, and mental health providers was organized to identify additional key concepts; confirm that the wording of the scales was neutral, comprehensible, and without ambiguity; and reach a consensus on the overall organization of the survey. The draft survey was then administered in person to another convenience sample of transmen who already had or desired gender-affirming mastectomy. Immediately following scale administration, a structured cognitive debriefing interview was conducted with the “think aloud” technique16 to verify scales were complete and valid with regard to content and free of ambiguous, redundant, upsetting, or irrelevant items. These interviews were transcribed, coded, and analyzed with the same qualitative methods used previously. Refinement of scales and item reduction was performed with two rounds of cognitive interviews, analysis, and revision.

Expert Review and Final Structuring

The refined scale was reviewed and consensus findings were incorporated into the finalized instrument. Distinct preoperative and postoperative modules assessed diagnosis-specific practical, functional, and physical outcomes. In its final form, the University of California, San Francisco, Gender Quality of Life (UCSF Gender QoL) survey consists of 29 items organized into three sections that are common to the preoperative and postoperative surveys. (See Figure, Supplemental Digital Content 1, which shows that the UCSF Gender QoL survey is divided into three domains assessing gender identity, social health, and satisfaction with physical appearance, http://links.lww.com/PRS/E406.) The first section explores gender identity, and the second section assesses social health and relationships. The final section measures patients’ satisfaction with their physical appearance. The preoperative module includes two additional sections assessing social support, preoperative resources, chest binding, and physical discomfort associated with chest binding. The postoperative module assesses satisfaction with recovery from surgery. (See Figure, Supplemental Digital Content 2, which shows that the preoperative sections of the UCSF Gender QoL survey are designed to evaluate chest-binding habits and patient access to preoperative resources and support networks, http://links.lww.com/PRS/E407. See Figure, Supplemental Digital Content 3, which shows that the postoperative section of the UCSF Gender QoL survey aims to assess satisfaction with the aesthetic outcome of surgery and whether their recovery met their expectations before surgery, http://links.lww.com/PRS/E408.)

Field Testing

The UCSF Gender QoL survey was then administered to 51 transmen who met the standard World Professional Association for Transgender Health criteria for chest surgery and scheduled to undergo bilateral subcutaneous inframammary mastectomies with free-nipple grafting performed by a single surgeon at the University of California, San Francisco between 2016 and 2018. Adult patients were eligible to participate if they were fluent in English and consented to study procedures. This cohort was distinct from the cohort that participated in interviews for scale creation and refinement. The survey was administered electronically or in paper at their presurgical consultation or in the preoperative holding area before surgery. Demographic and surgical data including age, race, sex, medical comorbidities, psychiatric comorbidities, length of surgery, weight of breast tissue removed during surgery, estimated blood loss, readmission within 30 days, surgical-site infections, hematomas, seromas, hypertrophic scarring, nipple graft loss, contour irregularities, dehiscence, and any revision surgery were also recorded for statistical analysis. The surveys were e-mailed electronically using the Research Electronic Data Capture survey tool to patients 6 weeks and 1 year after surgery. Up to three reminder e-mails were sent as was necessary. At each of the three study time points, patients also completed a previously validated generic quality-of-life instrument—the World Health Organization Quality of Life–Brief Form—for comparison.17

Statistical Analysis

Sample demographics were summarized using mean ± SD and simple frequencies (percent). Nonparametric demographics are summarized using median values and interquartile ranges. The section scores for the World Health Organization Quality of Life–Brief Form survey were calculated and transformed into a 0 to 100 scale according to validated procedures.18 The raw scores for each section of the UCSF Gender QoL survey were transformed into a 0 to 100 scale using the Percent of Maximum Possible Scores method,19 and median values with interquartile ranges were calculated for each time point. Wilcoxon signed rank tests were used to detect significant differences between the median baseline and postoperative scores at 6 weeks and at 1 year. To appropriately represent nonparametric data, effect size (r) was calculated using the z statistic divided by the square root of 2n, which is analogous to the Pearson coefficient.20 Effect size was interpreted as r > 0.10 representing a small effect size, r > 0.30 as medium, and r > 0.50 as large.21 A value of p < 0.05 was used to assess for statistical significance. The Cronbach α was calculated for each of the three UCSF Gender QoL survey domains to assess internal validity. The validated World Health Organization Quality of Life–Brief Form scoring protocol was applied for missing responses in both assessment tools. Missing values were substituted with the individual’s mean section score, and sections missing greater than 20 percent of responses were excluded from the analysis.16 All data calculations were conducted using Stata (StataCorp, College Station, Texas).

RESULTS

Demographics and Surgical Characteristics

As summarized in Table 1, the median age of all 51 patients surveyed was 30.0 years (interquartile range, 25 to 37 years). Most patients identified as male (82 percent), Caucasian (69 percent), and college educated (58 percent). Over half of the patients surveyed reported a history of anxiety and/or depression, and 18 percent reported being unemployed at the time of surgery.

Table 1. - Patient Demographics
Characteristic Value (%)
Age, yr
 Median 30.0
 IQR 25–37
BMI, kg/m2
 Median 27
 IQR 22–30
Length of hormone therapy, mo
 Median 12
 IQR 12–36
On hormone therapy 42 (84)
Sex
 Male 42 (82)
 Gender-queer/nonbinary 7 (14)
 Agender 1 (2)
 Declined to state 1 (2)
Race
 Caucasian 35 (69)
 Asian 2 (4)
 Black 4 (8)
 Latino 1 (2)
 Other 7 (14)
 Declined to state 2 (4)
Education level
 Graduate school 4 (3)
 College 22 (58)
 High school 11 (29)
 Elementary school 1 (3)
Employment status
 Employed 21 (41)
 Student 15 (30)
 Disability 4 (8)
 Unemployed 9 (18)
 Declined to state 2 (4)
Marital status
 Single 29 (57)
 Married 6 (12)
 Cohabitation 9 (18)
 Divorced 2 (4)
 Separated 1 (2)
 Declined to state 1 (2)
Comorbidities
 Hypertension 5 (10)
 Diabetes mellitus 0 (0)
 Anemia 3 (6)
 HIV 0 (0)
 Hepatitis C 2 (4)
 Liver disease 1 (2)
 Depression 30 (61)
 Anxiety 31 (63)
 PTSD 3 (6)
 Bipolar disease 5 (10)
 Substance abuse 11 (23)
 Current smoker 7 (14)
IQR, interquartile range; BMI, body mass index; HIV, human immunodeficiency virus; PTSD, posttraumatic stress disorder.

As summarized in Tables 1 and 2, median length of preoperative hormone treatment was 27 months (interquartile range, 12 to 36 months). Most patients presented with medium to large sized breasts (68 percent), nearly half (43 percent) exhibited grade III ptosis, and one-quarter of patients (27 percent) had poor skin quality.

Table 2. - Preoperative and Intraoperative Characteristics
Characteristic Value (%)
Breast size
 Small 12 (24)
 Medium 17 (33)
 Large 18 (35)
 Unknown 4 (8)
Breast ptosis
 None 18 (35)
 Grade I 5 (10)
 Grade II 1 (2)
 Grade III 22 (43)
 Pseudoptosis 1 (2)
 Unknown 4 (8)
Skin elasticity
 Poor 14 (27)
 Moderate 7 (14)
 Good 23 (45)
 Unknown 7 (14)
 Mean length of surgery ± SD, min 182 ± 37
 Mean breast weight removed ± SD, g 476 ± 424
 Mean estimated blood loss ± SD, ml 52 ± 20

Use of Chest Binders and Preoperative Resources

As summarized in Figure 1, most patients (88 percent) reported a good support system before surgery, and 92 percent reported stable housing before surgery. Forty-nine percent of patients reported binding their chest at least some of the time, whereas 39 percent reported never wearing a chest binder. Around friends, 45 percent of patients wore a chest binder at least some of the time, and 43 percent reported wearing a chest binder around strangers.

Fig. 1.
Fig. 1.:
Preoperative resources and chest binding. (Above) Patients were surveyed regarding access to preoperative resources such as housing, medications, and primary care providers (PCP) experienced with transgender health issues. (Below) Patients were also asked to report how often they wore chest binders and in what contexts, in addition to any chest pain, difficulty breathing, or difficulty at work as a result of chest binding.

Quality-of-Life Scores

Baseline quality-of-life scores were collected for 51 participants before surgery; 36 completed postoperative surveys at 6 weeks and 22 completed 1-year postoperative surveys, for response rates of 71 percent and 43 percent, respectively. Eighteen patients (35 percent) completed surveys at all three time points. To ensure a similar distribution among short- and long-term follow-up data, Mann-Whitney U tests were performed to compare median baseline scores of participants who completed either a 6-week or a 1-year postoperative survey. There were no statistically significant differences in baseline scores of any World Health Organization Quality of Life–Brief Form or UCSF Gender QoL survey domain, suggesting that a similar population was represented in short- and long-term follow-up responses.

The results of the World Health Organization Quality of Life–Brief Form survey indicated a statistically significant increase in the median quality of life 1 year after surgery. The largest improvements were observed in the psychological health and the social health domains at 1 year (Fig. 2, above). Similarly, the effect size detected by the psychological health and social health domains at 1 year were large compared to other domains of the World Health Organization survey (Table 3).

Table 3. - Effect Size of the UCSF Gender QoL and World Health Organization Surveys at 6 Weeks and 1 Year
Effect Size (r)
6 Weeks 1 Year
UCSF Gender QoL domain
 Gender expression 0.57 0.58
 Social health 0.61 0.62
 Body image 0.61 0.62
WHO domain
 Social health 0.41 0.57
 Environment 0.52 0.44
 Psychological health 0.58 0.62
 Physical health 0.36 0.44
WHO, World Health Organization.

Fig. 2.
Fig. 2.:
Preoperative and postoperative results for the UCSF Gender QoL Survey and World Health Organization Quality of Life–Brief Form (WHO-BREF) surveys. Box plots of (above) the median World Health Organization and (below) UCSF Gender QoL Survey scores after converting to a 0 to 100 scale and interquartile ranges show a statistically significant increase in quality of life 5 weeks and 1 year after surgery. *p < 0.05; **p < 0.01; ***p < 0.001.

In comparison, the UCSF Gender QoL survey detected a larger improvement in quality of life at 6 weeks and 1 year after surgery (Fig. 2, below). The largest improvement was detected in the physical appearance section, followed by the social health and the gender identity domains. The effect sizes of the UCSF Gender QoL survey were also larger than those measured for the World Health Organization survey (Table 3).

The standardized Cronbach α values assessing internal validity were between 0.78 and 0.90 for all sections of the UCSF Gender QoL survey. (See Table, Supplemental Digital Content 4, which shows the Cronbach alpha for all three domains of the UCSF Gender QoL survey, http://links.lww.com/PRS/E409.) In addition, the Cronbach α value did not change significantly when each question was removed from the calculation, indicating that the questions in each section were neither irrelevant nor redundant.

Recovery from Surgery

Patients had a median length of follow-up of 23 weeks (interquartile range, 6 to 52 weeks) (Table 4). One patient (2.0 percent) developed a major postoperative complication and was taken back to the operating room to evacuate a hematoma (Table 4). Hypertrophic scarring was the most prevalent minor complication (43 percent); nine of these patients received triamcinolone acetonide injections (Table 4). Only one patient who was an active smoker experienced partial nipple loss (2.0 percent) (Table 4). Three patients developed hematomas (10 percent), two of which were managed conservatively with observation and compression dressings (Table 4). There were no planned revision operations performed on any of the 51 patients surveyed.

Table 4. - Postoperative Complications
Value (%)
Length of follow-up, wk
 Median 23
 Range 6–52
Complications
 Infection 1 (2)
 Nipple loss 1 (2)
 Contour deformity 2 (4)
 Hematoma 3 (10)
 Seroma 1 (2)
 Hypertrophic scar 22 (43)
 Readmission 0 (0)
 Return to the operating room 1 (2)

Every patient surveyed after surgery said they would choose it again knowing what they know now (Fig. 3). Regarding aesthetic outcomes, 35 percent of patients had nipple sensation 1 year after surgery, which was similar to the proportion of patients with nipple sensation 6 weeks after surgery (Fig. 4). Only two patients were unsatisfied with their scars after 1 year, and 14 patients (64 percent) were happy overall with the appearance of their scars. Every patient surveyed at 1 year reported that gender-affirming surgery changed their life for the better.

Fig. 3.
Fig. 3.:
Postoperative recovery and expectations. Patients were asked about their expectations regarding gender-affirming surgery at 6 weeks (above) and 1 year (below).
Fig. 4.
Fig. 4.:
The patients were also asked whether they would choose surgery again knowing what they know now and whether gender-affirming surgery changed their life for the better at 6 weeks (above) and 1 year (below).

DISCUSSION

The UCSF Gender QoL survey is a novel, validated patient-reported outcomes tool for evaluating quality of life after gender-affirming mastectomy in trans male patients. Although some retrospective studies show a multitude of benefits associated with gender-affirming surgery, this is one of the few prospective studies to show a durable improvement in quality of life after mastectomy. Importantly, the UCSF Gender QoL survey detected much larger effects than the World Health Organization Quality of Life survey developed for cis-gender individuals, reflecting its ability to capture unique experiences and issues relevant to trans male patients. The UCSF Gender QoL survey also exhibited excellent internal validity, possibly paving the way for future studies that better characterize how gender-affirming surgery can affect the lives of transgender patients.

Prior studies have relied on various generic quality-of-life and mental health surveys to assess the efficacy of gender-affirming surgery. In a 15-year cross-sectional study, gender-affirming surgery relieved patients’ gender dysphoria such that there was no significant difference in postoperative psychosocial well-being compared to that of the general population.22 In one of the largest studies to date evaluating 400 transgender individuals, those who had undergone gender-affirming surgery reported a higher quality of life than those who had not, and these improvements did not diminish with time.23 Despite these findings, the authors note that “detailed interviews are essential for the generation of research tools specific to female-to-male transgender community” and that “future projects should begin by organizing focus groups with the goal of critiquing and altering demographic surveys and quality of life tools … that more accurately reflect the female-to-male experience.”23 A systematic review by Andréasson et al. importantly notes that there is a lack of instruments that are not only valid in transgender patients, but can also distinguish the effects of surgery from other confounding factors such as hormone therapy or other surgical interventions.9 Prior bottom surgery was not assessed, and the majority of patients who took the survey were on hormone therapy; thus, there are not enough patients to determine whether there is a statistically significant difference between those on hormone therapy and those who are not. Both of these issues are important avenues for future research.

To focus on the effects of gender-affirming mastectomy, qualitative interviews were used to elicit key themes and experiences related to trans male patients’ quality of life and body image before and after chest surgery. Body-image is a multifaceted psychological construct that encompasses one’s attitudes and perceptions of their physical appearance and their perception of how their physical appearance influences their interactions with the world around them. Langer expands transgender body image into a private and public framework and relates it to chest surgery24; double mastectomy, if one does not take one’s shirt off in public, is a primarily private intervention—public recognition only occurs to a shirtless person. The public and private aspects that are more important depend on the individual’s needs.

Our survey attempts to capture both aspects of chest surgery. For instance, “I feel comfortable at my workplace,” and, “I feel comfortable with my chest exposed in a public pool or beach,” ask patients to consider their public body image. In contrast, “I feel comfortable with my chest exposed during sexual activity,” and, “I feel comfortable around my spouse/partner,” investigates more private aspects of their body. In the public domain, 96 percent of patients reported comfort in the workplace 1 year after surgery, whereas only 43 percent felt comfortable with their chest exposed at a pool or beach. This difference is likely attributable to the visibility of large scars left after inframammary mastectomy. In the private domain, 83 percent felt comfortable around their partner and with their chest exposed during sexual activity. Thus, the UCSF Gender QoL survey can provide a nuanced assessment of how patients experience everyday life as they move between public and private domains, thereby providing a more comprehensive assessment of how surgery alters these unique experiences.

The UCSF Gender QoL survey has some limitations, most notably the use of the term “masculine.” For patients who identified as gender-queer or nonbinary (14 percent of the cohort), a desire to feel masculine may not be a major motivation for surgery. Themes and feelings surrounding masculinity were common during qualitative interviews, reflecting the exclusion of gender nonbinary individuals from our cohort. Future qualitative interviews that include people who identify as gender-queer or gender-nonbinary are needed to find a more inclusive term. Anecdotally, we have witnessed a recent dramatic increase in the number of gender-queer and gender-nonbinary patients presenting to our clinic for gender-affirming mastectomy. We know of no studies to date that have examined whether gender-queer or gender-nonbinary individuals are less likely to undergo or desire gender-affirming surgery than transmen.

Another limitation is the single-center, single-surgeon nature of the study. Most patients at the University of California, San Francisco, undergo inframammary mastectomy with free nipple grafting. This technique is well suited for patients with large ptotic breasts and poor skin quality and requires less revision surgery than periareolar techniques.25–28 Unfortunately, the large scars that are left behind can have a significant influence on patients’ private and public body image. As Langer notes, “For those who choose, scars versus the type of result of each surgery is a complicated issue … one patient who had ‘double incision’ was caught off guard when a new casual friend asked them about his scars when his shirt accidentally revealed them. He did not want to out himself yet as trans so he said, ‘chainsaw.’”24 Regardless, given the preoperative attributes of most of the patients presenting to the University of California, San Francisco, for gender-affirming mastectomy and the superior reproducibility, inframammary mastectomy is the overwhelmingly preferred technique to recontour the chest at the University of California, San Francisco.

This idea, however, poses an interesting question that has yet to be fully elucidated. Using the UCSF Gender QoL survey, future studies should compare patient satisfaction and quality of life after inframammary and periareolar mastectomy. At 1 year after surgery, 61 percent of patients agreed or strongly agreed that they were satisfied with the appearance of their scars, whereas only 9 percent were not. More specifically, 43 percent were comfortable at the pool, beach, or locker room, whereas 83 percent reported they felt comfortable with their chest exposed during sex. Interestingly, no studies that we know of have characterized patient preferences with regard to chest surgery, and current techniques are based largely on plastic surgeons’ ideals of what is most aesthetically pleasing.

Transgender health and rights continue to dominate the social and political discourse in the United States. Thorough investigations into patient-reported outcomes and quality of life after surgery will be crucial for establishing the profound positive impact that gender-affirming surgery can have on the lives of transgender individuals. As evidence of the benefits of transition-related care mounts, possibly access to transition-related care will continue to expand nationwide along with legislative protection to ensure that access. Although there are limitations, the UCSF Gender QoL survey provides a useful tool to evaluate patients’ attitudes toward their chest in a variety of social and private settings, thereby providing a more nuanced description of how gender-affirming surgery improves or impairs their quality of life.

ACKNOWLEDGMENTS

This study was supported by the University of California, San Francisco, Resource Allocation Program for Trainees, 2016. The authors would like to thank all of the transgender individuals who contributed to the construction and validation of their survey. They exhibited enormous courage talking about very private, at times traumatic experiences and issues for the betterment of future individuals. The authors would also like to thank all of the transgender health care professionals who not only provided input to make our survey better but also care for transgender individuals every day.

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Supplemental Digital Content

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