Promoting trans patient autonomy in surgical preparation for phalloplasty and metoidioplasty: results from a community-based cross-sectional survey and implications for preoperative assessments

Abstract

Background

Some transgender and nonbinary people undergo phalloplasty and/or metoidioplasty as part of their medical transition process. Across surgical disciplines, a variety of resources are used to assist patients who are preparing for surgeries, including educational materials, workshops, peer support, and lifestyle changes. For gender-affirming surgeries, patients undergoing assessments to discern whether they are ready to undergo the surgery, and to assist them in achieving preparedness when needed. Little research investigates what resources are useful in helping patients to feel prepared to undergo phalloplasty or metoidioplasty, and how assessments and resources can promote patient autonomy in the process. Respect for patient autonomy is one of the central tenets of ethical healthcare, yet historically, scholarship related to pre-surgical assessments for gender-affirming surgery has focused determining the ideal surgical candidate rather than respecting patient autonomy and ascertaining individual patient needs.

Methods

This study sought to fill this gap by utilizing data from PROGRESS (Patient-Reported Outcomes of Genital Reconstruction and Experiences of Surgical Satisfaction), a cross-sectional, community-based survey of trans and nonbinary adults from the United States of America and Canada who had undergone one or more of these surgeries.

Results

Results revealed most participants (86%, n = 186) felt prepared to undergo surgery, though the majority of our sample (53%, n = 105) did not find referral letter assessments to be helpful. Peer support such as online resources/blogs were rated as highly useful, along with surgical consults. In a multivariable logistic regression, higher perceived preparedness was associated with identifying as queer (inclusive of gay, bi and pansexual compared to being straight), and feeling that one’s assessment process was useful (as opposed to not useful). Type of assessment was not significantly associated with preparedness; therefore, what is most useful when preparing for surgery may vary across individuals.

Conclusion

Healthcare professionals who interact with preparing patients should develop new or utilize existing resources to assist patients in identifying their preparation needs and achieving preparedness. Our data supports assessments that center surgical care planning rather than assessing level of gender dysphoria. Future longitudinal research could further refine which assessment processes are most effective in helping patients who are preparing for these surgeries. Assessments should ensure that patients are appropriately prepared to undergo and recover from surgery through a robust process of informed consent.

Background

For some transgender and nonbinary (henceforth referred to as “trans”) people, gender-affirming surgery is an important part of their transition. Gender-affirming surgeries can include chest surgery (e.g., top surgery/mastectomy, breast augmentation), reproductive system surgeries (e.g., hysterectomy/oophorectomy, orchiectomy) and genital surgeries (e.g., metoidioplasty, phalloplasty, vaginoplasty). For trans people assigned female at birth, genital surgery options include phalloplasty and metoidioplasty. Not all trans people desire gender-affirming genital surgeries [1] and not everyone who wants these surgeries has access to them [2], though here, we will focus on those who do.

Phalloplasty was originally designed to reconstruct a penis after physical trauma, cancer, or disease, and has since been used to create a penis for trans people who desire one through use of non-genital flaps [3, 4]. It has been described as a “modular set of procedures that can be combined, mixed and matched to meet the needs of each individual patient.” [5] Phalloplasty, with or without additional procedures, can be performed in several different ways, with numerous variations occurring over time and geographic region. Currently, radial forearm free flap (RFF) phalloplasty is the most common type of phalloplasty globally [6], though other types of phalloplasty, such as anterolateral thigh flap (ALT) and abdominal flap, among others, are also performed.

Metoidioplasty is an adaptation of surgeries to resolve hypospadias [7], which is a condition where the urethral opening is located somewhere other than the tip of the penis. In trans individuals, metoidioplasty utilizes the hypertrophied clitoris resulting from testosterone therapy [8]. Metoidioplasty is performed by releasing ligaments of the clitoris [9] and uses labia tissue to increase the bulk of the phallus/penis. Unlike phalloplasty, a donor site is not needed, and therefore this procedure causes no major scarring [6].

Various types of patient preparedness programs exist across surgical disciplines, yet the ideal patient preparation program has not been identified in most fields, nor is a universal best practice agreed upon [10]. In some surgical fields, several interventions have been demonstrated to impact patient feelings of preparedness [11]. Aftercare and planning for recovery are also major considerations when undergoing surgery that are addressed in some surgical preparation programs [12]. Some evidence suggests that patient preparedness may lead to positive surgical outcomes, higher quality of life after surgery [13], and fewer surgical complications. In contrast, feeling unprepared for surgery has been associated with patient dissatisfaction [14].

A paucity of literature documents how patients prepare for phalloplasty and/or metoidioplasty. In one qualitative study, participants reported spending a large amount of time and energy preparing themselves and highlighted relationships with their care team as important to their preoperative process [15]. Other research suggests that social media may also be a source of content that helps patients prepare for, or ask questions after, surgery; one analysis found that patients used social media to ask questions about post-operative scarring and wound care, medical supplies, recovery, and general appearance [16]. There are data which indicates that, out of a variety of methods used by patients before and after surgery to improve their experiences with their genitals, peer/social support was found to be one of the most helpful methods both before and after surgery [17].

While preparing to undergo phalloplasty or metoidioplasty, a patient will likely be working with a surgeon or surgical care team which utilizes the World Professional Association for Transgender Health (WPATH) Standards of Care (SOC) guidelines for assessments prior to gender-affirming surgery [18]. The SOC require patients undergo one assessment external to their surgical team (often called “referral letters” [19]) by a “qualified healthcare provider” in order to undergo surgery [18]. Previous iterations of the SOC required two referral letters for genital surgery [18, 20]. For many patients, these referral letters are then given to their surgical team and/or their health insurance company in order for them to be surgically cleared for surgery, and to receive insurance approval [18]. Referral letter assessments are usually conducted by a mental healthcare provider, social worker, and/or medical provider [18, 21]. Such assessments typically do not focus on aspects of preparation such as hair removal (specifically prior to phalloplasty), exercise, diet, aftercare planning, or physical and psychological changes that may result from the surgery; sometimes, these topics are addressed in educational materials from some surgical teams and service providers [22] who work with patients preparing for phalloplasty and metoidioplasty, but these practices are not required as per the WPATH SOC [18]. The content and thoroughness of the assessment is similarly non-standardized, and depends largely on who is conducting the assessment, the procedure in question, the assessment tools used, and the goals of the assessment [19]. This is consistent with direction in the WPATH SOC version 8, which directs that “no single assessment process will fit every person or every situation.” [18] There is evidence indicating that referral letters serve as barriers to care, rather than facilitators [19].

In addition to these referral letters, some surgeons and/or surgical teams provide patient education as part of readiness/preparedness documentation prior to surgery [22, 23]. The content of this education or resource provision is similarly non-standardized and not stipulated by the WPATH SOC [18], and again varies depending on who is providing it. Further, some surgical teams do not require letters of support or assessments of any kind, unless required by the patient’s insurance provider. Instead, these providers focus on patient education and the informed consent process [24]. Indeed, some service providers have begun to recognize the need for more comprehensive patient education and planning prior to phalloplasty and/or metoidioplasty, and have shifted to defining their readiness assessment procedures in terms of “surgical care planning” [25]. Surgical care planning then, will typically include obtaining a letter of support in line with the WPATH SOC, but will also provide more comprehensive educational and resource support in line with the other elements of preparedness discussed above [25].

In addition to there being no standardized assessment model, there is little guidance on what credentials the assessor should have. For instance, according to the WPATH SOC, assessors do not have to be mental health professionals and need only have a Master’s-level degree and sufficient knowledge to enable them to perform a competent assessment [18]. However, neither “sufficient” nor “competent” are terms defined within the SOC. Provider knowledge levels are vary, which makes it more difficult to evaluate the helpfulness and legitimacy of the required assessment. Indeed, if the assessors have little knowledge of the surgery, these assessments may fail to help patients make informed decisions about what is best for their own bodies. If this informed decision-making process fails and patients are not able to make the best decisions for their own bodies, patient autonomy is compromised; this is discussed next in further detail.

Respect for patient autonomy is one of the foundational principles of biomedical ethics; as described by Beauchamp and Childress [26]. It underlines the need to allow individuals to make decisions and take actions based on their own beliefs and values [26]. One of the ways in which autonomy is respected in healthcare is in the informed consent process, through which a patient is provided with the information necessary to understand and voluntarily consent to the planned medical intervention [26]. A readiness assessment can enable this process by ensuring that the patient has adequate understanding of the surgery they are about to undergo.

Elliot Marrow talks about the inception of pre-surgical assessments in the 1950s in a recent article, describing how few surgeons were willing to provide gender-affirming care to trans people, though some providers did create their own pre-surgical criteria to try to prevent postoperative regret and clinician liability [27]. Initially, this involved ensuring that patients would blend-in with cisnormative culture by being heterosexual and looking a certain way (or passing as cisgender) [28]. Psychologists and clinicians felt they needed justification beyond patient desire to undergo surgery, and, further, feared backlash from patients and the media if they allowed the ‘wrong people’ to access surgery [27]. These early clinician experiences lead to the creation of the WPATH SOC (then called the Harry Benjamin Standards of Care for Gender Identity Disorders) and clinicians began to assess patient surgical readiness [29]. This process was designed, in part, to protect medical teams and additionally, out of fear of regret from patients [30]; it was not designed to support patients in choosing what they wanted for their own bodies, nor to promote patient autonomy or informed consent [27]. The gatekeeping nature of these original assessments led trans people to feel as though assessment processes are not designed to support them or their decision making [31]; this feeling is still pervasive today and described in recent literature [30].

Though gender-affirming surgery assessments have shifted in recent years to be oriented more explicitly toward serving both the patient and surgeon, they may still be informed by fear [27]. The lack of a standardized assessment model can restrict patient autonomy if they are based in cisnormativity or fear of patient backlash, rather than intent on providing a robust process of informed consent by adequately informing the patient and ascertaining understanding of the desired procedure.

Overall, the current process of determining readiness of patients who wish to undergo phalloplasty and metoidioplasty varies greatly, with some surgical centres relying solely on letters of support from mental healthcare providers and others using patient education programs. To our knowledge, no published research has investigated what factors are associated with patients feeling prepared to undergo these surgeries, or whether any one type of preparedness process leads to better readiness overall. Given this lack of literature on trans patient preparedness, it is essential to not only understand the factors associated with perceived preparedness for surgery, but also for services to be built and delivered to bolster patient preparedness. The aim of this investigation was to utilize data from a community-based cross-sectional sample of trans individuals who had undergone phalloplasty and/or metoidioplasty to examine factors associated with feeling prepared for these surgeries and argue for the creation of more patient-centered and autonomy-promoting preparedness programs based in evidence.

Methods

Patient-Reported Outcomes of Genital Reconstruction and Experiences of Surgical Satisfaction (PROGRESS) was a community-based, patient-oriented, and cross-sectional survey. The study questionnaire was developed by a team of seven trans community members with lived experiences of phalloplasty and/or metoidioplasty, and was led by the first author. A full copy of the survey is available to view in the Supplementary Material. Survey responses were collected online from April to July 2022. Eligibility criteria included adults identifying as trans, nonbinary or other related terms; having had phalloplasty or metoidioplasty; living in the United States of America or Canada; and being able to self-complete the questionnaire in English. We posted recruitment flyers on trans community-identified social media channels, Facebook groups, and Reddit forums, and shared flyers in trans-related listservs. The survey was cross-sectional, online, self-completed, and anonymous, and included questions about demographics, preparing for surgery, recovery experiences, perceived changes in mental health, gender dysphoria and euphoria, and overall surgical satisfaction. Participants were not provided with an honorarium for taking part in the survey. This study was jointly approved by the University of Victoria and University of British Columbia’s Human Research Ethics Boards (certificate number 21–0033). Informed consent to participate was secured online prior to any data collection.

Measures

The primary outcome variable for this analysis was perceived preparedness for surgery. This was measured using responses to a single question adapted from Kenton’s Preoperative Preparedness Questionnaire [14]. This single item was chosen instead of the whole scale due very little variance and non-linearity when testing responses to the overall scale for assumptions of logistic regression. The item asks participants to rate how much they agree with the statement “Overall, I felt prepared to undergo surgery.” Originally, this item was part of a measure designed for use prospectively before surgery; however, all items in this questionnaire were adapted by our team to use past tense language. In both versions, response options include a 6-point Likert scale ranging from “strongly disagree” to “strongly agree,” which we then dichotomized into ‘disagree’ versus ‘agree’ for logistic regression analyses.

Exposure measures

Demographic characteristics included age, ethnoracial identity, education, income, sexual orientation, and country. Other exposures of interest included type of gender-affirming assessment, mental health in the year leading up to surgery, access to community support or resources prior to surgery, and self-reported usefulness of assessments. To determine the type of assessment, participants were asked a question created by our team which read, “What did the process of obtaining approval to have surgery look like for you?”. Response options included: two letters (from a therapist or mental health care provider), one letter, interview by an assessor, a combination of letter(s) and something else, a workshop or training, and ‘other.’ This variable was dichotomized into ‘two letters’ and all other response categories for the regression analysis. A follow- up question asked, “how useful was this method of approval in preparing you to have surgery?”. Responses to the question included a 5-point Likert scale ranging from ‘not at all’ to ‘extremely useful’. These responses were also dichotomized into ‘not useful’ versus ‘useful,’ where ‘useful’ included all responses other than ‘not at all.’

We adapted the Canadian Community Health Survey’s single-item measure of mental health [32] to be used in the past tense and added a time qualifier to determine mental health in the year prior to surgery. The item asked, “How would you describe your mental health in the year before you had phalloplasty or metoidioplasty?”. Response options were unchanged from the original measure and included a 5-point Likert ranging from ‘poor’ to ‘excellent.’ Categories were dichotomized into ‘poor or fair’ versus ‘good, very good, or excellent’.

Accessing community in the time before surgery, either for support or information, was measured by creating a derived variable from responses to the question, “When deciding to have surgery, where did you access information about surgery options and outcomes?” Respondents were invited to select all that apply. Those who selected any of the following were placed in the ‘accessed community’ category: conversation with peers, Facebook or reddit groups, online virtual support groups, or in-person support groups and/or reading blogs by post-op trans men. Those who did not select one or more of these were categorized in the ‘did not access community’ groups. This question was followed by another asking how helpful each of those resources were in preparing the participant to have surgery. Responses to this question included a 5-point Likert ranging from ‘not helpful at all’ to ‘very helpful’.

We created a variable derived from three questions to discern who was ‘active process’ or between planned surgeries, stages, or awaiting revisions; this is a commonly used and understood phrase within trans community. We categorized participants that reported fewer numbers of completed than planned surgeries as active process. Additionally, if they stated a planned surgery was indefinitely put on hold or that they were waiting for revisions, we placed them in the active process category. Lastly, if a participant wrote in any open text box within the survey that they are between stages or active process, they were placed in this category.

Analysis

Data were cleaned to remove eight survey responses which did not meet our eligibility criteria. Four other responses were removed due to having completed less than 10% of our survey. All questions in the survey were optional resulting in varying amounts of missingness. Twelve participants who did not answer the question about preparedness, which was the dependent variable used in the analysis, were not included in the multivariable logistic regression. Several other variables in our analysis that contained missing counts larger than ten were coded as a separate category to ensure those participants were still kept in regression analyses. The final analytic sample, which excluded those who did not answer the dependent variable questions, included 203 responses.

The analysis in this paper includes descriptive statistics, bivariate analyses, and a multivariable binary logistic regression; all analyses were conducted in SPSS version 29. First, we prepared descriptive statistics for variables of interest followed by cross-tabulations with chi square tests between the outcome variable and all exposure variables (p < .05 considered statistically significant). Next, we conducted an automatic, backwards selection binary logistic regression with preparedness as the outcome variable with all categorical explanatory variables. Our multivariable logistic regression utilized an automatic backwards conditional selection process, which removed the least statistically significant items while finding the model’s best fit, and did not force demographic variables into the model. We tested age, ethnoracial identity, income, education level, sexual orientation, and country of residence as covariates. This regression method was chosen due to the exploratory nature of the research and because extant literature cannot indicate what may be associated with patient preparedness for these procedures.

Results

Table 1 presents descriptive statistics of all demographic and exposure variables, stratified by our outcome variable of surgical preparedness. Chi square results are not displayed as only one item statistically significantly varied by self-reported preparedness. Most of our participants self-identified ethnoracially as white (84%). Participants described their sexual orientation as queer (37%), straight (27%), gay (21%), and bi (24%). Our participants mostly had high levels of education with 30% having attended graduate school or achieving a graduate degree. Additionally, participants had high personal income levels with 40% making more than $80,000 annually (CAD or USD depending on their location).

Table 1 PROGRESS participant demographics by Self Report of being prepared or not for surgery (N = 203)

In terms of surgeries, about half (51%, n = 103) had solely phalloplasty, 83 (38%) had solely metoidioplasty, and 21 (9%) had both procedures. Only 40% (n = 85) of our sample had surgery prior to 2020, whereas 59% (n = 124) had surgery in the past two years. Over half (54%, n = 110) of our respondents were identified as ‘active process’ meaning either they were waiting for additional surgeries or between planned stages of surgeries. Participants typically traveled outside of their state or province of residence for surgery (42% n = 85), but only 10% (n = 20) traveled outside their country. However, 14% (n = 28) of participants had surgery within their city of residence.

Overall, participants reported high levels of preparedness, with 86% (n = 186) feeling prepared. Results of the full Preoperative Preparedness Questionnaire can be found in Table 2; for all items in the measure, participants largely agreed with statements related to aspects of preparedness. The item in which participants rated their lowest level of agreement was whether they felt prepared to cope with a catheter at home after leaving the hospital.

Table 2 PROGRESS participants’ average likert rating from Kenton’s preoperative preparedness measure (N = 203)

Regarding assessment types, about half underwent two external assessments for referral letters from mental health providers (51.7%, n = 105). The participants underwent two referral letter assessments as our survey took place prior to the updated SOC version 8, which removal the second letter assessment requirement. Approximately another half had a different type of assessment (48.2%, n = 98). Overall, 53% (n = 105) of our sample reported that their assessment was not at all useful in preparing them for surgery. Based on a chi-squared test using Fisher’s exact test, whether participants self-reported their readiness assessment as useful was statistically significantly associated with self-reported preparedness at a p < .05 level. Among those who received two letters, half (55%, n = 88) said this was not at all useful in preparing them to have surgery. Only 13% (n = 26) reported feeling that two letters were very or extremely useful in preparing them for surgery.

While preparing for surgery, 92.1% (n = 187) of our sample accessed community supports or resources, including conversation with peers, support groups or community-created resources. The resources most highly rated as helpful included social media, including Facebook groups and reddit forums, with 47% (n = 101) participants indicating these were ‘very helpful’ in preparing them for surgery. Similarly, participants rated conversations with peers as very helpful (n = 48, 22%) or helpful (n = 34, 15%) in preparing for surgery. Outside of peer-created content or resources, consults with surgeons were also rated highly as helping people prepare, with 40% (n = 87) stating these were ‘very helpful’, and 24% (n = 52) rating them as ‘helpful’. No demographic or other characteristics were significantly associated with feeling prepared in bivariate analyses.

Correlates of surgical preparedness

The multivariable logistic regression analyses resulted in a final model with 2 statistically significant factors: sexual orientation and usefulness of assessment processes. More specifically, those who self-identified as queer were more likely to report feeling prepared for surgery than non-queer participants. We conducted a post-hoc chi-squared test looking at sexual orientation and self-reported access to community in the time leading up to surgery. We found that queer participants were statistically significantly more likely to have access community in the time leading up to surgery (p < .05), which may have contributed to greater feelings of preparedness, as compared to non-queer participants. Table 3 presents odds ratios (adjusted and unadjusted), and 95% confidence interval results for the logistic regression.

Table 3 PROGRESS participants’ correlates of Surgical preparedness (N = 203)

Discussion

Our results add to a growing body of literature about the experiences of access to gender-affirming surgery and ethical considerations regarding bodily autonomy. This analysis revealed high rates of perceived preparedness among a community-based sample of trans individuals who had undergone phalloplasty and/or metoidioplasty. Participants who felt that their assessment process was useful were more likely to report feeling prepared to undergo surgery. Which type of assessment process a person underwent, however, was not statistically related to whether participants felt prepared. The following discussion showcases these results in relation to the existing literature on surgical preparedness for phalloplasty and metoidioplasty, with specific attention paid to critiques of current assessments within context of informed consent and patient autonomy.

Participants in our study reported feeling prepared to undergo phalloplasty and/or metoidioplasty and had high scores on the individual items of the Preoperative Preparedness Questionnaire [14] and the general question of overall preparedness. The resources ranked by our participants as most highly useful in preparing were Facebook and Reddit groups. Social media spaces like these are frequently places where community members ask questions about outcomes or experiences, get support from peers and share experiences of surgical teams. It is well-known within the trans community that prospective patients preparing for gender-affirming surgery spend a large amount of time preparing themselves, outside of their relationships with their surgeons/surgical teams, by seeking out community information or support to help them feel ready [17, 33]. Other literature documents peer support and shared experiences as useful to patients who are recovering from surgery [34], experiencing a health concern [35], or undergoing medical treatments for cancer [36]. While accessing community support or resources was not a statistically significant correlate of feeling prepared, participants’ responses clearly indicated the utility of these resources. It is likely that there was a lack of statistical significance related to community support due to the small number of respondents who did not access community support (8%, n = 16).

Our participants also rated surgical consults as highly useful while preparing for surgery. These consults often deliver important patient education and address questions or concerns [23]. Along with surgical consults, in many other surgical fields, patients are now being helped by social workers or other practitioners to develop care plans or for pre-surgical preparation [37]. Some literature suggests that patients given resources by care teams are more likely to feel prepared, so long as they judge those resources to be beneficial [38]. This type of care planning is beginning to occur for gender-affirming surgeries but, for our participants, was likely not standard. If patients are not being assisted to prepare by surgical care teams or other providers outside of surgical consultations, then peer support and accessing other resources become essential to achieve preparedness.

Another important finding from our results was that overall feeling of preparedness was more likely among those participants who found their assessment process useful. Overall, however, referral letter assessments were ranked as low in utility for preparing for surgery. For most participants, assessment processes involved obtaining letters from mental healthcare providers documenting the stability of their mental health [18]. While less common, a small proportion (2%) of our participants received education or workshops as processes of determining readiness. If, indeed, many patients are not being provided educational materials or coached by surgical care teams about how to prepare, referral letter assessments may be the only time in which a patient has interactions with a healthcare provider specifically about whether they are prepared to undergo surgery or not. With a primary goal of evaluating the mental health of patients, these types of assessments may present a missed opportunity to truly understand whether a patient feels ready to undergo surgery and to develop a care plan to address needed preparation. Instead, referral letter assessments may provide little value to patients who are seeking access to complex surgical interventions.

Our research adds to other literature critiquing referral letter assessments as not useful to those accessing gender affirming care [19]. While one study noted prospective patients feeling that they wouldn’t be considered ready for surgery if they have any mental health concerns [39], another noted that many patients feel assessments are simply gatekeeping processes [40]. Still another has critiqued assessments as not offering information needed for patients to be fully informed about what to expect postoperatively [41]. For our participants, type of assessments did not impact self-reported preparedness but the perceived utility of these did. The current version of the WPATH SOC suggests only one letter of readiness for genital surgeries [18]; this may be a step towards reducing barriers to care, but any letter requirements may also reinforce an unhelpful process for those preparing for surgery. This suggests that, along with the other literature previously mentioned, assessments often do not uphold patient autonomy if they do not serve the process of informed consent by assessing patient knowledge and providing education regarding the procedure. Our results suggest that needs for pre-surgical preparation vary between patients. This may mean that individualized approaches to helping patients better prepare are needed for these surgeries.

In contrast with other literature, among our sample retrospective self-reported mental health in the year leading up to surgery was not significantly associated with the likelihood of participants feeling prepared to undergo these surgeries. Yet, mental health is one of the primary focuses of assessments within current standards of care [18]. While mental health has been documented to impact surgical outcomes across a range of disciplines [42], it is not clear whether mental health prior to surgery plays a role in whether a trans patient feels prepared for phalloplasty or metoidioplasty. Gender dysphoria may also negatively affect mental health and may be associated with anxiety and depression, which surgery might help resolve [43]. Assessments or surgical care planning that recognizes mental health as influencing outcomes but focuses on other aspects of surgical preparation may, therefore, lead to more readiness among prospective patients. More research is needed to understand how mental health plays a role in promoting preparedness for these procedures.

Together, our results paint a picture of those who undergo phalloplasty and/or metoidioplasty as highly prepared patients who are most likely to feel well-prepared when they have access to assessments or preparation programs that they find useful. Preoperative processes may best assist patients if they are designed with resources patients have identified as helpful. Without other preparation programs or educational materials, many patients are left to prepare themselves for these very complex surgical procedures. While assessment processes do not always have the goal of assisting patients to prepare for surgery, this is changing with more clinicians offering surgical care planning or education tools for patients. For those without access to formalized education or preparedness programs, patients are put in a position to rely on peers and other information they can access online to get information and feel ready. While our participants felt peer-created resources were very useful in preparing them to have surgery, patients should not primarily be responsible for preparing themselves for complex surgeries like phalloplasty or metoidioplasty.

Limitations

Our results are not without limitations. This cross-sectional study asked participants about a range of experiences that for some happened many years ago. This introduces the risk of potential recall bias. However, over half of our participants were ‘active process’ or between stages of surgeries, and a similar proportion had surgery in the two years prior to our recruitment. The recentness or the timing of their particular surgeries may relate to our findings. including a potential for increased access to care in recent years or increases in uses of informed consent models. Positively, this may have lessened the impact of recall bias in our data.

Our sample is majority white (83.7%, n = 170) and young, with 65% being between the ages of 18–24 (n = 133), as well as formally educated, as the majority had a college/university degree (48.3%, n = 98) or a graduate/professional degree (31.5%,n = 64). A substantial amount of participants (63.1%, n = 128) also made $50,000 or more per year. Participants belonging to these demographic groups may have had an easier time accessing community support and online resources, and faced less barriers to surgery, such as financial/insurance barriers, lack of housing, and so on. Our results do not capture the experiences of participants who are less resourced or face increased stigma and barriers in healthcare environments. In addition, the majority of our participants came from the United States, with only a small portion from Canada. These results may, therefore, be less applicable in a Canadian context. We are further unable to draw conclusions about people outside of these geographic locations.

Most questions in our survey and in this analysis were developed by the patient-oriented research team, which provided increased face validity, but lacked psychometric validation. Kenton’s Preoperative Preparedness Questionnaire [14] has not had its psychometric properties evaluated; however, the content of the questionnaire is relevant for the surgeries of interest in this paper and will allow us to compare our results with the results of others who use it. Additionally, we did not ask qualitative questions that would have further clarified or given context to some responses that participants provided; such questions could have explained why some resources were more useful than others when preparing for surgery.

Implications

The results presented in this paper are novel and have far-reaching implications for the fields of medicine, counseling, and social work, for policy makers and academics, and for those who create standards of care. We demonstrate that current processes of preparing patients for surgery (e.g., referral letter assessments/clinical assessments) may not be adequate for some patients. It is therefore essential to discern what types of readiness processes are useful to patients. It may be useful to borrow from other surgical disciplines developed to holistically support the post-surgical recovery of patients undergoing other surgeries. In addition, individualized preparedness programs might better suit patient needs. For these surgeries community support provided goes beyond the preparation that is currently provided through assessments. Future research should seek to understand what specifically is most useful for patients preparing for surgery and make recommendations to policy makers and clinicians about patient preparedness programs that may be more effective than current processes.

Conclusion

Healthcare professionals who interact with preparing patients should develop new or utilize existing resources to assist patients in identifying their preparation needs and achieving preparedness. Our data supports assessments that center surgical care planning rather than assessing level of gender dysphoria. This can ensure the necessary flexibility so that such assessments are based in the evidence of what will be most helpful for patients and, ultimately, that patient autonomy is upheld through a robust informed consent process. While it is important to adjust as needed for individual patients to ensure their needs are met, the educational and planning content of assessments should be standardized throughout gender-affirming care so that all patients can benefit from high-quality care. Future research should further investigate what patients need from assessments in order to feel prepared for surgery.

Phalloplasty and metoidioplasty are complex surgical procedures that can be challenging to prepare for as a patient. Ensuring patients are prepared to undergo these procedures is essential to ensuring informed consent is upheld and since feeling prepared may impact surgical outcomes and overall satisfaction. The standard approach of determining readiness through meeting a therapist or mental health care provider and obtaining two letters in support of having surgery may not be useful for some patients who are preparing to undergo these complex surgeries. Accessing community resources and surgical consults remain incredibly important to patients in this process. Ultimately what an individual patient finds useful may vary and individualized approaches to developing preparedness should be supported. Patient preparedness should be the collective responsibility of the care team, readiness assessors, and patients. Readiness processes should support patients in evaluating what they need to feel ready and provide those needed supports or resources. Assessments should serve as a way to respect autonomy by ensuring patients are appropriately prepared to undergo and recover from surgery through a robust process of informed consent.