Introduction

Within the last decade, the US saw a 3-fold increase in patients seeking gender-affirming surgeries [1, 2]. As state legislatures passed laws banning transgender care exclusions among third-party payers, the American Society of Plastic Surgeons reported a 20% increase in transgender-related surgeries from 2015–2016 alone [3]. Considering the expanding coverage and protection for trans-related procedures, it is likely that there will be an increased demand for clinicians to be familiar with transgender-focused needs and care.

While the standards of care developed by the World Professional Association for Transgender Health (WPATH) states that surgeons performing these surgeries must provide an extensive consultation with the patient and healthcare team [4], there are no guidelines given on the best approach or what topics should be included in this consultation. One study showed that transgender and gender non-conforming (TGNC) patients wanted to see more pre- and post-op images of previous patients and the expected wound healing, medical supplies needed for recovery, and discussion of complications treated by the same surgeon [5].

Our study aims to perform a needs assessment of patients undergoing gender-affirming vaginoplasty. We sought to determine what information patients seek throughout their vaginoplasty journey, from the time they seek out vaginoplasty, to their hospital stay, and the early and long-term post-op periods. Second, we aim to determine where patients are currently getting this information and what avenues they believe are the most appropriate to receive this information. Obtaining these data from post-operative vaginoplasty patients will aid in creating more informative and patient-centered resources for future patients.

Materials and methods

Study design and IRB approval

This study was approved by the University of Illinois at Chicago IRB (Protocol #2020-1537). Due to the online and anonymous nature of the study, a waiver of informed consent was granted. Consent was instead implied for participants completing the study. The study consisted of an anonymous survey emailed to patients who underwent primary gender-affirming vaginoplasty between September 2018 and September 2020 at the University of Illinois Hospital and Weiss Memorial Hospital. We chose an anonymous survey design over individual interviews or focus groups to allow patients to feel open to providing very honest and potentially negative feedback and to ensure the highest degree of confidentiality.

Questionnaire development and pre-testing

The questionnaire was initially developed by expert opinion, then preliminary feedback was obtained from members of patients’ associations with whom our team collaborates. In particular, members of the Transfeminine Alliance Chicago and Transmasculine Alliance Chicago were essential in including topics relevant to the members of the TGNC communities. Please find the complete questionnaire in the supplementary materials.

Participant recruitment

Patients were contacted by phone by a member of the study team to inquire if they would be interested in participating in the study. The voluntary nature of the study was reinforced. If the patient was interested, they provided their email address. On receipt of the recruitment email, the nature of the study was again laid out and participants could choose to click a link to participate, indicating their consent to be included in the study. Participants in this study were at least 18 years of age or older and were able to read and understand English.

Survey administration and measures to prevent multiple entries

Study participants completed the survey on a dedicated web-based browser. The survey was voluntary, and no incentives were provided for its completion. To avoid multiple entries from participants, automatic IP checks were implemented.

Measures

The survey measured patient demographics such as age, race/ethnicity, commute time to clinic (for surgery, follow-ups, etc.), household income, occupation, and highest level of education. Furthermore, the survey consisted of open- and close-ended questions with Likert-scale items. There were four sections of the survey (pre-surgery, during hospital stay, early post-surgery, and long term). Each section contained questions that asked the importance of a topic to the patient. In addition, for the pre-surgery section, we asked where information was obtained about the topics and participant preference on where to receive it from.

In July 2020, our practice began providing a handout detailing the peri-operative course in the hospital as well as post-operative care instructions. Participants were asked if they found the handouts helpful. For patients who did not receive the handout, they were asked if they thought a handout would have been helpful in these settings.

Open-ended sections

We provided participants with open-ended questions and space for free text. The participants were asked about any topics or resources not mentioned but important to them as well as any advice for future patients.

Analysis

All questionnaires submitted were considered in the final analysis, regardless of their degree of completion. The answers to the survey questions were analyzed with descriptive statistics without performing any statistical correction. The responses to the free-text portions of the survey were analyzed qualitatively through thematic analysis. The data were manually coded (by author AM) and then themes were developed through a deductive approach. The initial themes were reviewed with the entire research team and based on their consensus final themes were named.

Results

Our study yielded a 56.7% response rate (17/30 participants). See Table 1 for the demographics of our respondents. Twelve participants fully completed the survey, while the remaining five participants completed more than half of it. All questionnaires were included in the final analysis.

Table 1 Participant demographics.
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Financial burden

Forty-one percent of our participants reported spending between $5001 and 15,000 on out-of-pocket costs related to vaginoplasty and recovery (e.g., insurance co-pays, medications, supplies, etc.), while the remaining 59% spent <$5000. Seventy-three percent of respondents reported that knowing the out-of-pocket financial costs was extremely important to them before surgery.

Eighty-seven percent of participants reported expected time off work as a very or extremely important topic to cover in the pre-operative consultation. We asked participants to report an estimated amount of lost income from time needed to recover from vaginoplasty and time spent for pre-op and post-operative appointments. Of the 16 responses, 68.8% had a loss of <$5000, while 25.0% reported between $5001 and 15,000 loss. One respondent (6.2%) reported a >$50,000 loss.

Topics of importance before vaginoplasty

A list of all pre-op topics ranked by importance to patients is provided in Table 2. Of the 30 pre-surgery-related topics, the top-ranked topics were the need for medical clearance, details about surgery, possible complications, and details about neovaginal self-dilation (Table 2).

Table 2 Importance of pre-operative topics and source of information.
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Participants preferred to receive information on most topics from their surgeon directly. The exceptions to this were expected changes in mental health and gender dysphoria and information on fertility preservation (FP), which participants wanted from their mental healthcare and primary care providers, respectively (Table 2).

Participants also reported on their preferred method of receiving information on each topic (verbal, written, or other); at least 50% of the participants preferred that the information be provided in a written format for 29 out of 30 topics (Table 2).

Topics of importance during hospital stay

We asked participants about the importance of certain healthcare professional activities and patient education opportunities during their hospital stay. All items were ranked as very or extremely important by over 80% of participants (Fig. 1).

Fig. 1
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Topics of importance during the hospital stay.

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Topics of importance before discharge/post-op

A list of all post-op topics ranked by importance to patients is provided in Table 3. Over 60% of patients ranked each topic as very or extremely important. Regarding the source of information, participants generally chose one of our provided options of surgical team, nursing team, or written document. Topics that some participants selected “other” were those pertaining to pelvic floor relaxation/physiotherapy and dilation (Table 3). One participant suggested a series of videos aimed specifically at post-vaginoplasty trans women. Another participant wanted this information directly from the physiotherapist.

Table 3 Importance of pre-discharge topics and preferred source of information.
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Topics of importance during long-term care

Participants ranked how important they thought topics were during long-term care, which pertained from months to years after surgery. The topic that got the highest rating was which scenarios should trigger a request for follow-up. The topic that was rated as least important was preventative cancer screening (Fig. 2).

Fig. 2
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Topics of importance during long-term follow-up.

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Written resources

In July 2020, our practice began providing a handout detailing post-operative care instructions. Seventy percent of respondents who had received the handout stated it was very to extremely helpful to them. The patients who did not receive the handout believed that it would have been helpful. Similarly, we began providing a handout outlining the typical hospital stay; 80% of respondents who had received this handout rated it very or extremely helpful and 88% of those who did not receive it felt that it would have been helpful.

Open-ended responses

Thematic analysis identified five main themes: recovery process, satisfaction, trust in healthcare providers, information delivery, and neovaginal dilation and depth (Table 4).

Table 4 Thematic analysis.
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Discussion

Gender-affirming vaginoplasty is a complex surgery and should be considered a journey rather than simply an operative procedure. There is a tremendous amount of information that patients must be aware of. However, there is limited literature on navigating the most important topics and the best way to educate patients on them. We aimed to address this problem with the goal of creating evidence-based resources that will improve patient satisfaction and vaginoplasty outcomes.

Pre-vaginoplasty topics of importance

In reference to topics of most importance during pre-surgery, it is not surprising that possible complications were a highly rated topic (93% very or extremely important). As surgeons, we believe it is crucial that the patient understands the risks and complications to give informed consent for surgery. This finding is consistent with the research by Poceta et al. that revealed discussion of possible complications was one of the topics of interest for patients during consultation [4]. The study by Poceta et al. also found that TGNC patients wanted to see more pre- and post-op images of previous patients and the expected wound healing, as well as information on medical supplies needed for recovery [4]. Our study found that 79% of patients ranked pictures of the expected final appearance as very or extremely important, with fewer patients placing the same importance on pictures of the immediate post-operative appearance (60%) and the early post-operative healing (64%). At least 85% of patients felt that these sets of pictures should be provided by the surgeon.

The topic of FP (e.g., sperm banking) garnered mixed ratings of importance. Given the permanent infertility resulting from orchiectomy, one might expect patients to be highly interested in this topic. However, our clinical experience is congruent with a low level of interest in FP; in the last 12 months, only one patient in our practice pursued sperm banking. Patients may have rated this topic as less important in a pre-op vaginoplasty consult because they believe that FP should have been pursued earlier; 54% of patients felt that their PCP was the most appropriate source for this information. A review revealed that many transgender patients in America, Australia, Canada, and Germany had a desire for children but only a small percentage underwent FP [6]. Although WPATH recommends FP counseling for transgender patients, many do not receive it at any point in their journey of transitioning. Furthermore, even when patients are given options for FP, they often need to seek these procedures on their own [7,8,9,10].

Financial burden

The financial circumstances found in our study population are comparable to other research populations. Current literature indicates that the most common barrier to receiving gender-affirming care was financial concerns, with almost half of their population reporting <$10,000 annual income [10, 11].

In comparison to the annual household income and occupation status of our participants, the impact on finances seems clear. Despite 65% of participants reporting an annual income of below $20,000, 41% reported out-of-pocket costs of $5000–15,000. There is a need for more information on expected financial impact, with 73% of participants stating this is a very or extremely important topic and 43% reporting receiving no information on this topic. One patient suggested providing resources for “Information on financial support (Charities, loans, etc.)”. This type of information-seeking supports the need for a multidisciplinary team as surgeons are likely ill-equipped to provide this information. We recommend enquiring about savings for out-of-pocket costs early in the pre-operative consult and ideally, providing an approximate out-of-pocket cost or vaginoplasty budget.

Post-vaginoplasty information

Our findings were consistent with previous research in the plastic surgery field, which showed breast reconstruction patients wanted to know about hospital and home care interventions, prevention of post-surgical problems, and information of possible effects on the body in the post-operative period [12,13,14]. In our study, topics with the highest rated importance included post-operative restrictions and wound care information as well as detailed instructions on performing dilations, and when to seek follow-up. This was echoed in the thematic analysis with two of the themes being recovery process and neovaginal dilation and depth. Participants provided suggestions about optimizing recovery, including a focus on the effects on mental health (Table 4). In the development of resources for post-operative vaginoplasty care, teams should include detailed information on these topics to help the patients be more comfortable in their care post-surgery.

One topic that medical professionals often focus on is prostate cancer screening. However, 42% of respondents stated that preventative cancer screening information was not important to moderately important. This reflects the difference in priorities between healthcare practitioners and patients.

Pelvic floor health

Our results highlight the importance of providing instructions about dilation and pelvic floor muscle health to vaginoplasty patients. In both the pre-operative and post-operative sections, all topics regarding dilation and the pelvic floor were rated very to extremely important by most participants. Despite this, over a fifth of patients reported that they did not receive information on pelvic floor physiotherapy pre-operatively. Participants highlighted the desire to see a pelvic floor physiotherapist and suggested a video series as well. We believe that any program performing vaginoplasties should include or work closely with pelvic floor physiotherapists dedicated to the TGNC population. Furthermore, we see an opportunity to develop additional resources (e.g., a video series, booklet, or app) with detailed instructions and visual aids regarding dilation and pelvic floor muscle relaxation. This may be especially important for patients who live far from their surgical center.

Topics not well covered

A considerable number of patients (>30%) reported not receiving any information on certain topics. These included out-of-pocket costs (discussed above), as well as expected changes in mental health, expected depth of the neovagina, long-term follow-up details, pictures of the final appearance, and FP options. In our practice, some of these topics are covered in a verbal discussion only. Given the abundance of information presented to patients, it’s possible that they either do not remember all the topics being covered or they are not covered adequately [15]. When considering patient education resources, these topics should be considered for inclusion.

When participants were asked to state any topics not mentioned that are important to cover, responses included loss of depth, what to expect when having an orgasm, effects on prostate, and more detail regarding pelvic floor exercises.

Information delivery

Another critical aspect of our study was enquiring about the best methods and sources to disseminate information to patients. In the pre-operative section, over 50% of patients preferred receiving information in a written format for nearly every topic enquired about. This speaks to the information overload that patients tend to experience at the physician’s office [16]. However, we cannot expect written resources to replace personal interactions with the medical team. In our qualitative analysis, patients reported that most topics would be best covered by both a verbal discussion and a written handout.

For most topics, patients also specified that they wanted to receive the information from the surgeon’s team directly, with a few exceptions for topics better covered by their primary care provider or mental healthcare provider. Although we are aware that many patients have friends who have already undergone vaginoplasty, almost no participant chose “friends” as a preferred source of information. Similarly, even though the internet is full of material related to vaginoplasty, participants did not choose this as a preferred information source. Trust in healthcare providers was one of the identified themes from our qualitative analysis. Patients develop a personal connection with their surgical team and place value on being able to trust the medical professionals caring for them. This calls on us to ensure we are directly providing accurate, complete, and easy-to-understand information.

We found that most participants would prefer a comprehensive booklet of the vaginoplasty process, rather than individual handouts. We hypothesize that this is because patients want to be able to plan ahead. Providing post-discharge instructions at the initial visit may help patients to better understand what is involved in the recovery phase. It may be helpful to include a checklist that outlines items to purchase (e.g., lube, pads, douching supplies) and things to prepare (e.g., place to stay, support people, pre-prepared meals) for a successful recovery.

Relationship with healthcare providers

One of the most emphasized topics was the importance of the cultural competence of providers (i.e., avoiding misgendering). All participants ranked this topic as very to extremely important. In the thematic analysis, trust in healthcare providers was identified as a major theme. One participant reported that they were misgendered by the medical staff throughout their inpatient stay. Unfortunately, this is a recurring phenomenon for the TGNC community and consistent with existing research showing mistreatment in healthcare settings, uninformed medical providers, and feeling shamed by providers [8]. Another participant stated to not “trust the doctors or nurses to take care of you. Fight for yourself. If you’re in pain, do what u need to do to get pain meds.” This raises concern and emphasizes the importance of an adept medical team that will treat the patients with respect and compassion. Institutions providing gender-affirming surgery should ensure that all staff—from the nurses to the porters to the hospital chaplain—are provided with training on caring for this population.

Limitations

One limitation of our study is the small sample size and response rate; we had 17 participants in our study. Having a larger sample size would have been helpful in gauging the needs of the TGNC community and would give us a better understanding of how to best accommodate them. In addition, as this was an exploratory study, we did not run statistical analyses as with so many topics and relatively few participants, results would be clouded by multiple testing problems.

Conclusions

This study provides abundant information on the needs of gender-affirming vaginoplasty patients. Participants indicated their desire for comprehensive pre-operative education with an emphasis placed on the importance of neovaginal dilation and possible complications. Participants are interested in receiving information both verbally from the surgical team and in written format, ideally within the context of a comprehensive document covering all phases of the vaginoplasty process. Finally, as with many previous studies, the importance of cultural competence and being able to build a trustworthy relationship with their healthcare providers were prominent findings of this study; underscoring the challenges that transgender patients face in interacting with the healthcare system.

Further research is needed to be able to generalize these results from our single-center experience.