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AUGS/IUGA Scientific Meeting 2019
Panel: Beyond Surgery...What We All Need to Know A ...
Panel: Beyond Surgery...What We All Need to Know About the Transgender Patient
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Good afternoon, Nashville. So thank you for having us. The title of my talk is why I'm excited to be here, why I'm so excited to be here. I don't know if anybody's ever been nervous and excited at the same time. It's a really weird feeling, but that's how I feel right now. I'm going to talk to you a little bit about the state of transgender health as it relates mostly to the United States, but also what's been happening in Europe and how we've evolved, and really why we were asked to come here today and talk about this important topic. And then I'm going to introduce these really special people who are up on stage with me today. These are my disclosures. So you probably recognize these women. In my viewpoint, given the patients that I take care of, these are iconic women. To the left is Lily Elby. She was one of the first European women, transgender women, to undergo vaginoplasty surgery in Germany in the 1930s. We've been doing this surgery for a long time, which will bring us back to why we haven't been studying our outcomes for that period of time. Christine Jorgensen was an American transgender woman who was brave enough to come out and tell her story in the 1950s and was also operated on in Europe in Denmark. This is Dr. Georges Debrou, who was a French surgeon who operated in Casablanca in a hospital he had called the Clinique du Parc. And there, he performed over 3,000 vaginoplasty surgeries between the late 1950s and early 1970s and was one of the first and almost only surgeons to actually publish on his outcomes to talk about the pearls and pitfalls of doing these surgeries and to share his technique. And we have a lot to thank Dr. Debrou for in terms of understanding the way vaginoplasty is performed. And I believe that a lot of our modifications are based off of the way that he did his surgery almost 70 years ago. In the United States, transgender surgery, what we call now gender-affirming care, genital affirmation surgery, started in the late 1960s. Johns Hopkins was a pioneer, started doing these surgeries in around 1965, 1966, other academic institutions like Stanford University followed suit and also started performing these surgeries and offering gender-affirmation care to transgender patients who were declaring themselves and coming out in the United States during that time period. So the whole point of this was that gender-affirmation care was based in the academic sector. It was academic doctors who wanted to study outcomes, who wanted to research and do good for people who were doing a lot of these surgeries. In the late 1970s, a paper came out by a psychiatrist that essentially headlined that we were performing surgical care for psychiatric disorders and that we weren't helping patients. And a massive moratorium in the United States occurred. And all academic centers shut down their practices. And we no longer perform vaginoplasty surgery in the United States for decades. It slowly crept up in the private sector as private practice surgeons, mostly general surgeons, some plastic surgeons in the late 80s and early 90s started realizing that there was still a huge patient population that could benefit from these surgeries. And they started practicing fee-for-service care and performing these surgeries on patients who were only able to actually afford them. Meanwhile, in Europe and in some parts of Asia, mostly Southeast Asia, surgeons were still performing these surgeries. And they were still being done in academic centers. Amsterdam was a massive leader in the care of these patients, as was Belgrade, as was Ghent in Belgium. We were a little bit behind, but luckily we finally caught up. So in the 1970s, 80s, and 90s, and in the early 2000s, we weren't talking about transgender care. It wasn't until about seven, eight, nine years ago that we finally started recognizing transgender individuals as a subset of our patient population that needed integrated care into our health system. In 2014, I'm sure many of you who read Time Magazine or who just walk by newsstands, back when we used to walk by newsstands, saw a cover adorned by Laverne Cox, a famous transgender actress who's been out, who's been an advocate for the transgender community. This Time Magazine article is titled The Transgender Tipping Point, America's Next Civil Frontier. And this was really brought about by social media, television. There isn't really a lot within the actual healthcare sector in the United States that brought this about. This was an actual social, a social manifestation of what was going on in our society. But what was very interesting, and this is a good example of how social movements can change the way we take care of patients, healthcare sector and healthcare field followed suit in this endeavor. And soon it became very popular to open transgender centers, to start moving the private practice, surgical care into the academic world. And things essentially blew up over the last five years. Our government also started taking note of this civil rights movement. In 2016, the Department of Health and Human Services declared under the Obama administration's Affordable Care Act, that it was discriminatory to not offer transgender services to individuals seeking affirmation care. And so since 2016, Medicare and many Medicaid programs have covered care for these patients. And I'm proud to say that in 2018, 98% of my gender affirmation surgeries were covered by insurance. And so we've seen a huge, huge shift. 10 years ago, we didn't even know anything about transgender care. Nobody would have invited me to come and talk. Nobody would have invited these panelists. And so clearly I'm very excited. And we'll return to my excitement in a second. Transgender care in the literature has been huge as well. So not only have we shifted in the way that we cover the costs of these services and who's doing and rendering this type of care, but we're academically more interested in this patient population. If you searched and did a PubMed Medline search in 2008, and you search transgender and transgender care, transgender health, trans health, there were 86 publications in 2008. In 2018, so between 2009 and 2018, there were short of 1,200 publications. So we've seen this again, this massive shift in people who are actually interested in caring for this patient population and turning it into an academic endeavor. Since 2010, there has been a push to build multidisciplinary care teams and academic centers. Anybody who does transgender care will get hired somewhere. Good for me. Surgical care has been moving out of the private sector. In 2014, as it relates to gynecologic care and education, ACOG was the only society that provided education initiatives for transgender health. Right after that, AUGS, IUGA, ASRM, SUFU, AUA, have all incorporated transgender care into their programs. So I want to thank Mimi, as well as the committee, for inviting us today and making this a part of the AUGS, IUGA scientific program. So why am I excited? Emily Davidson, pay attention. So I am excited, this is really a goofy picture, but what I'm excited about is the mere fact that we're here today and where we're going in the next 10 years. So we spent the next 10 years bringing this patient population into visibility, into making them an important part of the people that we take care of. But where are we going to go from here? So now we're working on training programs. We taught our vaginoplasty course yesterday. It was really well attended and I believe well received, I hope, we'll find out in a couple of weeks. But we're working on developing fellowships in order to train individuals to learn how to do these surgeries so that they become more accessible to people who need them. And so our next huge initiative is to train gynecologic subspecialists who are interested in providing this kind of care, as well as providing information and education to individuals who may not actually want or need to do that kind of surgery, but want to take care of patients in the perioperative period. We're innovating our surgeries. This is probably the most exciting thing for me. We're figuring out how to take care of women who've been suppressed at puberty, who don't have the same type of skin grafts we can use to perform the standard surgery that we need to do. These patients in the last are emerging. In the last five years, they've almost tripled in numbers. And we're posed with this challenge of how to create a vulva and vagina from not a lot of material. And so we're continuing to innovate this. Do we use biologics? Do we start doing tissue engineering? Do we figure out how to do better peritoneal grafting and peritoneal flap? There's a lot of work to be done, and it's pretty exciting. We're also trying to figure out how to innovate the way we take care of patients who've had complications from their initial surgery. It's not so easy. And so we're really working on this, and I think that the next five to 10 years are going to be really exciting. In terms of research, this is probably one of the worst-studied patient populations worldwide. We've done our best. Europe is ahead of us. They've really created these registries to follow patients. In the United States, we're way behind. Surgeons are now sharing their outcomes with each other, creating registries, applying for grants that actually support LGBTQ care. And I envision that we're going to know a lot more about these patients so that we can better care for them in the future. And that's pretty exciting. So I believe that gender affirmation surgery belongs in the hands of the urologic specialist. Right now, it's a lot of plastic surgeons who perform this surgery, and that's fine. They're very, the individuals who do these surgeries are very talented. But if you actually think about what some of these procedures are, we should be the ones performing them and taking care of them. Urogynecologists are uniquely positioned to care for this patient population. It starts with training, education, and most importantly, support from our leadership. So again, I want to thank AUGS and IUGA. So I just want to briefly introduce my esteemed colleagues. I'm extraordinarily lucky to be up here. My part of this entire panel is the least exciting, so to speak. So please listen to their words. Dr. Annette Kuhn is the Director of Urogynecology at the University of Bern in Switzerland. She has made innumerable contributions to our subspecialty, but is also an expert in quality of life and gender affirmation treatment. And she's going to share her experience with that as well as the building of a multidisciplinary team. Dr. Irvin Kosyanchich is here from the University of Illinois in Chicago. He is the Director of the Pelvic Health and Reconstructive Urology Division. There, he practices reconstructive urology and does a ton of gender affirmation surgery, and is an expert in building a team in the perioperative care and taking care of these patients, and that's what he's going to talk to you about. And we're also very lucky to have Dr. Dimitri Nikolaevsky, who's coming to us from Upstate University in Syracuse, New York, who's also an expert in the care of these patients and has really built a practice in taking care of patients who've had complications. So please enjoy. Dr. Kuhn. It's not working. It's not working. Thank you. Thank you for this opportunity. Thank you for inviting. My name is Dimitri Nikolaevsky, and I'll be talking about the good, the bad, and the ugly, or also known as role of urologists in transgender care. I have only one disclosure. I have to admit we colluded with Cecile and created up-to-date chapter, Guilty. In the next two to three hours, I will talk about background patient preparation prior to affirmation surgery, genitourinary anatomy briefly, after phalloplasty, vaginoplasty, postoperative care and complications, and then long-term care. The population, the transgender population is estimated at about 1.4 million or 0.6% of the population. Now, you heard that Medicare is covering and most insurances cover for transgender surgery. And we see in multiple reports and literature in the past couple of years, there's increasing patients undergoing confirmatory surgery. Patients don't just show up to us usually for treatment. It's a long road ahead before they show up for the last step. There's WPAT guidelines. They need to have documented gender dysphoria, hormonal treatment, live in a new gender, preferred gender for at least 12 months. They present with two letters of recommendations. They may already have mastectomy or breast augmentation. They may have already hysterectomy or orchiectomy, and they present maybe for vaginoplasty, and they present maybe for vaginectomy, vaginoplasty, or phalloplasty. But when they come to us, there are additional considerations, general health, prior or other planned surgeries, substance abuse, nicotine abuse, chronic pain, pain medications. They may need social support. They may not be compliant. You could look at the prior appointments with other physicians that are not met, not compliance with hormones. So all of this need to be resolved prior to us even scheduling the surgery. So you need the team. You heard it over and over. You need the team before any surgery is scheduled and then post-operatively. Primary care, endocrinologist, mental health professionals, social workers. You need to have anesthesia team willing to work with you on pain, and you may need addiction specialists. You need to have your friendly pelvic floor therapy, clinic, OB-GYN, and the surgical team that may include your gynecologist and or plastic surgeon. They usually need a microvascular surgeon. You definitely need a reconstructive urologist to reach under your seats. You don't have reconstructive urologist there, but you need one, you need one, you need one. And maybe colorectal surgeon for complications. So briefly, surgical anatomy of the neophyllus. There are definitely more than two ways to do the phalloplasty, but you could break it into two categories. Mitoideoplasty is creation of local flaps only to create phallus suitable mostly for just urinating. And phalloplasty that is a much more complex procedure with the local and distant flaps to create phallus and urethra including bulbar and penile urethrum. So mitoideoplasty steps, they basically look like a very complex hypospadias repair where you tubularize local tissue around the catheter to create phallus like this. Phalloplasty starts almost the same way. You tubularize labia to create bulbar urethra, labia majora to create scrotum, but then you add a tube within the tube, usually construction. And this is an example of radial forearm flap where you tubularize the two flaps around the catheter and then you make it look more like a phallus when you transfer it to the perineum to achieve something like this. So from urological standpoint, the new urethra is made out of three parts, native urethra, ars fixa, which is perineal urethra or bulbar urethra equivalent, which is an ostomosis skin urethra that is called phallic urethra. To us, it's not surprising that 50, about 50% of these patients have complications, urological complications that include fistula, stricture, or both. Look how many moving parts there. So we now, for maybe last seven years, see a new kind of consultation in urological clinics, patient with neophallus recently created and urologic complication. We need to know what is the original operation exactly step-by-step, read the reports, call the original doctor, the remnant vaginal cavity is left behind. And this is due to the construction of vulnerability points, multiple suture lines that could break through, especially if you have an obstruction somewhere at the anastomosis, pressure buildup, suture lines break down, and you could create a bunch of fistula to any part that was created, scrotum, in a scrotal junction, or broke down vaginal cavity closure after vaginoplasty. So you could break it down. It's not random. There are about six different complications. Number one is anastomotic stricture, and they come as numerous simultaneous complications. So you do need a urologist in your team. This is example of completely obliterated distal urethra. Patients may choose two-stage repair or just perineal urethrostomy, and they urinate sitting down from then on. This is example of second-stage urethroplasty, where entire penile urethra was obliterated, and during the second stage, you see we placed buccal mucosal graft from the cheek to recreate at least part of the urethra and tubularize it like this in the second stage. Problem number two, incontinence. Usually, it's not stress urinary incontinence. It's post-void or continuous. So you suspect remnant vagina and fistula to the vagina remnant. Imaging and cystoscopy could help. This is a retrograde urethrogram showing contrast. This is not the bladder you see. This is actually a remnant vagina. Bladder should not be seen on the retrograde studies. And all of you probably familiar with copolysis or vaginectomy, so this is a little harder because it's a revision or redo copolysis or vaginectomy, but steps are the same. This is another example, distal stricture and cavity. This is not the bladder. The revision surgery is sort of difficult, and when we remove the tissue from this cavity, we expect to see something very simple, like a simple epithelium, like an abscess, but actually it comes back as just normal vagina, normal vaginal epithelium. I don't know what it means. I don't know if it causes any kind of future concerns leaving behind the vaginal tissue. We will see. In conclusion of this part, expect patient post-phalloplasty and genitourinary complications. These complications are common, simultaneous. Anatomy is different, and there is a high reported failure rate of these revisions. Very briefly, vaginoplasty is a combination of numerous known other procedures that include orchiectomy and penile disassembly. You create clitoroplasty out of the glands on neurovascular bundle. You shorten the urethra. You have not an easy dissection between the prostate and the rectum. This is probably the most dangerous part. If you're too close to the prostate, could be a fistula. Too close to the rectum, even worse. Penile inversion is used usually to create neovagina. You use penile skin as a flap and typically scrotal skin as a graft. You combine them together, and this is all inverted into the perineal cavity created. Remember, the prostate is left behind, seminal vesicles left behind. Rectum is close to your dissection, so be careful here. And these patients need urologic follow-up. They do develop prostate cancer occasionally. Complications are potentially numerous, ranging from sexual dysfunction to rectovaginal fistula. Couple of examples. This is an unrecognized rectal injury. Fistula, this could be treated in combination with, collaboration with colorectal surgeons, with tissue interposition. Patients after transurethral resections of the prostate who then underwent vaginoplasty may be at the increased risk of prostatoneovaginal fistula. And if you come tomorrow, there'll be a video attempt to fix this. Total vaginal obliteration after repeated rectovaginal fistula repairs that resulted in numerous untoward complications, and patients was very unhappy to go off into all of this and end up with no vagina. So genitogram showed no vaginal cavity. Patient is very unhappy. We had to revise and redo everything using robotic approach. Very scary dissection here in the previously created rectovaginal fistula. Neovaginal prolapse is also possible. This is the patient with previously created neovagina out of the GI segments. You could see the prolapse on the MRI. And with my partner, Natasha Ginsburg here in the audience. Thank you. This one goes to you. She robotically did the sacrocolpopexy using biological graft. And this is before and after. Like I said, neovaginal exams are important. Patients do develop cancers. There are case reports. Most of these patients already presented with the neovaginal fistula. Patients already presented with metastatic prostate cancer despite being on hormonal suppression all these years. In conclusion, build a team first. Please have a reconstructive urologist on board or on the speed dial. Understanding of the anatomy after prior surgery is key for success. Recurrent problems are common. And you need to have a plan for a lifelong follow-up. Thank you. Go to the everyday practice. I would first like to thank Cecil and both Ox and Ayuga to let us be here, to let us show what we've learned in the past. And we keep learning every day from us, from our providers, from our patients, and from whoever is dealing with us. The key point to organize a successful clinical practice that is dealing with trans health is based on education and respect. And those are the key points from the WPATH vision that we are embracing. WPATH stands for World Professional Association of Trans Health, which it's interesting because it's one of the first organization, for sure the only one that I know of, that is putting healthcare providers together with patients to provide a better outcome. With the good and the bad that this can come, but really it's a unique environment that you are entering when you're doing this. And as you can read here, respect, dignity, equality for the trans people, for the transsexualism, it's an important thing that you have to teach your colleagues that are working with you. You have to teach everybody who's interacting with the patients, from the front desk people to the nursing, to your peers, to try to embrace this culture of respect. We should avoid languages that is discriminatory. Just starting with the definitions, the normal, born as, we prefer to use terms like cisgender and transgender, rather than M2F, using terminology that can be like a disorder, terminology that can be stigmatizing their condition. The process is not a black and white. That's why it's so difficult to embrace and to learn these concepts. We can go from gender nonconformity, where it's an extent of the person's gender identity, rule or expression differs from the cultural norms. To the extreme of this is a gender dysphoria, where discomfort or distress caused by this discrepancy between the person's gender identity and their sex assigned at the birth. So it's a fluid process that can start in any point of the life of the patients. We have patients in the pre-puberty that are expressing some significant dysphoria because of their gender, or some other patients that experience this later in their life. Geriatric is for sure something that we have to embrace in our culture. So the gender dysphoria can present in various degree. So some patients require to go through the whole process of from the facial feminization to the top surgery, mastectomies or breast implants, to change in their sexual organs. The one that respect the characteristics of the opposite sex, that's why they're called transgender. So the goal of therapy is to have a vulva that resembles a cis female? In the case of male transgender, are they looking for a penetrative intercourse as well, being able to have an erection in their neophallosis, or the only goal is to have to be able to avoid in a standing positions? Those are all the details that when we were trained, when I was trained as a urologist, we were not used to us. We were not used to share with our patients. Now we've learned that these are more important details in what the patients are seeking from us. You have to be very careful to understand what patient expectations are and to be realistic in managing their expectations. They all want to be like Angelina Jolie or the male counterpart of this, but you are limited by their local anatomy. So you have to guide them, the patient. You have to, again, educate the patients on what realistically we can achieve. But there are also other aspects. That's why it's so important that we are talking to each other with other specialty. Plastic surgeons know some aspects of the reconstructive surgery. We as urologists know more on the aspects of, for instance, fertility preservation, gynecologists' fertility preservation in female. Those are all aspects that we have to address and propose to the patient. Unfortunately, we are forgetting this at the right point, which is when they start their hormones. We know that hormonal treatment can impair the fertility of our patients. But we also have to remember their cis anatomy. Trans female still can develop prostate cancer. So that's all the details that we have to integrate in our consultation with the transgender population. Don't forget about psychiatric issue. It's not just the gender dysphoria that needs to be evaluated. Gender dysphoric patient can have other problems that can be becoming acute in the post-operative setting. So have a contact with the mental health provider is essential. Eyewitnesses seen of acute psychiatric conditions because the patient was misgendered during the post-op period. And we had to call a psychiatrist to solve this. So preventing these conditions is much better than jumping on board when the patient is getting out of control. But there are, again, also other conditions that we have to keep in mind. These patients are on hormones. And this can actually represent a hazard for their high risk of cardiovascular problems, thromboembolic problems, and so forth. History of CDS is important because this can be correlated with other problems in the retros, for instance. But for sure, HIV status is not a contraindication for our surgery. So you have to also think broader what this patient is doing in their everyday life. Smoke, if the patient is smoking, what is smoking? Is using recreational drugs. Those are all the details that usually, when you're doing major surgery that we are used to do from hysterectomies to radical prostatectomies, we don't care. We rarely ask. Maybe just as a routine thing that you check into your EMR. But if you think that smoking, cigarette smoking, even marijuana smoking, can have a huge repercussion on the microvascularization in the area that you are doing the surgery, and that you are jeopardizing the possible result of your surgery, you should be very convincing with your patient that you are not going to touch the patient until he or she stops smoking. But also, you have to be even broader than this. So where is this patient living? Is she or he going to be able to take care of itself after the surgery? Those are all the conditions that we have to integrate when we are trying to open a successful trans health program. Be very specific in the description of the surgery, just so that the patient understands what is going to expect after the procedure. How is going to look the phallus that you are given? How is going to look the vagina? How is going to look the details of the clitoris or of the labia that you discussed previously? You go with this into details also right before the surgery. That's why we recommend to have at least one more consultation in the few weeks that's preceding the surgery, so that you can go again through this procedure. The patients you, when you, I'm always amazed when I'm talking to my patients, bring all the possible and worst complications. I would never have a surgery on myself if I had known that the possible complications that you can go through. And they're just smiling and say, doctor, this is not going to happen to me. Is that true? This happens to others. I say, no, this can happen to you as well. And I'm asking the patient to repeat in their words, what are those possible complications that I discussed? And only when I'm sure that he or she understands, then we go ahead and we go for the procedure. The patient needs to understand the risk, the possible benefits of this procedure, and so just to manage this unrealistic expectation. An informed patient is the patient that's less litigious, and it manages the post-operative period in a much better way. Informed consent is long and is detailed, and it's always not enough, because if you talk to your lawyers, they say, oh, you forgot all this, and you have to, according to them, you'll be probably spending a couple of days just discussing the possible things to put in the informed consent. But after the surgery is done, surgery is just a small detail of this whole process of the transition. After the surgery is done, you have to manage the big thing that happens after that. Maybe patients' expectations right after the surgery become worse. They say, oh my god, this is not exactly why I expected. I saw the pictures, but this is not exactly the same. We keep seeing that a lot of our patients are using more than other tools. The mirror, just to keep coming back, interesting. But we're seeing different. OK, sorry. So we are looking for patients to get mobilized as soon as possible. And as you can see here, we do have patients getting involved in, again, a truly multidisciplinary fashion. It's not only the surgeon, the resident, the fellow, the nurse that is coming there, but we are having physical therapists on board. We are having our physical therapist evaluating the patient even before the surgery so that we can improve the outcome of the surgery. We can reduce the pain and the discomfort and the functional problems after the surgery. They can mobilize the patient in the immediate post operative periods. We are very aggressive with this because we want to prevent the DVT problems. And we are also very active in teaching the patients on, for instance, the trans female on how and when to perform the dilation of their neural cavities. But that's, again, not enough. We have to go broader. We have to basically take care of this patient. That's the whole point of trans health care. Where is this patient coming from? Where is this patient going after the surgery? If he's traveling, can we have patients coming from all over the country or other countries? And they are living in very different conditions. Some patients are living in big cities. So you can talk with your peers, urologists, urogynecologists, or plastic surgeons, that they can take care of patients. But you have patients that are in very rural areas where obtaining, having somebody who can remove a catheter is an issue. So those are all things that needs to be integrated in our everyday practice. And again, you have to educate also your patient on how to take care of themselves. We can help them in getting toward their final results to take care of their dysphoria. But they have to be very responsible, the first one responsible, to the success of it. So in conclusion, the perioperative care is crucial to a good outcome. We have to manage a patient's expectation. And the education is the most important factor in having a successful center that is taking care of the trans health. This is my very last slide. And I want to thank, again, Iuga and Ox to give us the opportunity to share our knowledge. I encourage you to keep going with these great ideas. This is our very first workshop that we did yesterday. It was very well attended. And I think that we can only, in this way, improve the quality of care that we are offering to our trans population. Thank you very much. And to be honest, I'd never asked myself this question. But I think it's because both areas are a lot about quality of life. And that's the issue for the next 20 minutes. These are my disclosures. Quality of life, what does it really mean? I think there are many different aspects. For some people, it's belonging to a family, having a family. Money issues, wealth are, for some people, very important. For other ones, enjoying music and sex life may be very important. Some people like to live with animals, to play with animals, to enjoy animal life. Health, I think, is an important issue. Living in a democracy is important. As you can see here in the States and also in Switzerland, we are doing pretty well. And job is, for some people, very important for the quality of life. Looking at the University of Toronto, I found a good definition, the degree to which a person enjoys the important possibilities in his or her life. So if we look at quality of life, there are three life domains, being, belonging, and becoming. Being, I think it's pretty clear that's who one is. Belonging, maybe physical belonging, social belonging, like family and friends, community belonging. That's the connection with one's environment. And becoming, and I think that's an important issue in transgender people, is achieving personal goals and hope. And there may be a practical becoming, leisure becoming, or growth becoming. We looked into quality of life in transgender people. This is a study from about 10 years ago. I have to admit, this is not a great study, because the tool we used was not really validated for transgender people. We analyzed about 53 transgender people from my clinic and compared them to controls. And the controls were a little bit difficult. These were people from the gynecological clinic who had had at least two operations before. We used the King's Health questionnaire. And as I said, this questionnaire is not really validated for answering our question. And we found that there was a decreased quality of life concerning physical limitations in comparison to controls, and also concerning symptom severity. And symptom severity, as you remember in King's Health questionnaire, is the incontinence bit, which is not really appropriate. We then asked the same people, how do you rate your quality of life before and after sex reassignment surgery? On the left side, you see the female to male transgender people. On the right side, the male to female transgender people. And what you can see is that both groups found that their quality of life has improved, which is a little bit contradictory to the questionnaire results we got. And I think there's a lot of bias, also, if you asked transgender people, how is your quality of life after your sex reassignment surgery? I think it's very difficult to dare to say, well, my quality of life is worse, or I have pain, or I can't have the intercourse I want to have, or the cosmetic result is probably not as good as I expected. So I think in these results, there's probably quite a lot of bias involved. We then, in Switzerland, formed a group of people who look after transgender people and got a larger number for this study. This involved about 150 people altogether. And we looked at quality of life in transitioned trans persons. We divided them into transfeminine, transmasculine, and non-binary. You see the transfeminine are slightly older than the transmasculine and the non-binary. We used the SF36 questionnaire for quality of life and the ADS-K for depression. And as a comparison group, we used the German population survey from 1995. We got a lot of data out of that study, and I was really excited about this study. If you, I just want to point out very few points from the social demographic data. There was a lot of people who were single. You can see in all three groups, almost half of them There was a lot of unemployment in all three groups. It is about 20% in the transfeminine group. And this is about 10 times as much as the usual population in Switzerland is. And also, there was a large number of people living alone. Almost 50% overall. Just keep that in mind. I come back to that later on. So what did the study on quality of life show? And the SF36 questionnaire, remember the higher the points are, the better the quality of life is rated. So we found a decreased general health in the transgender people, and we found a decreased indicator for quality of life concerning mental issues. The conclusions from that study was that trans individuals are at greater risk for decreased quality of life and increased mental health problems. And I think we have to take that into consideration when we look after transgender people. Particularly vulnerable seems to be the group of non-binary individuals. We were then questioning us. It's probably not only all the medical treatments the patients got for their transgender diagnosis. There must be other factors. And this slide is probably the most important in my talk. You see on the left side the general life satisfaction in Switzerland. The green bar shows the general population in Switzerland, meaning the general population satisfaction is about 70%. It just means that we are not all running around with a happy smile on our face because we have lovely mountains and good air and good milk. And there are some factors. And the factors are written on the right side that may decrease your life satisfaction. So you can see here that being jobless decreases your quality of life. Being a single parent decreases your quality of life. Being single is not so good, foreigners and having a low income. People in general with a higher income and living with a partner have a better quality of life than the general population. And then I looked into the data of our transgender people. And I found that in that study about 35% were jobless, very high number. About half of them was a single parent. 62% of these people were single at the time, and 21% foreigners, which is the average in Switzerland. 34% had a low income, and only 16% a high income, and only one third was living with a partner. And I think all these factors may contribute to a poorer quality of life. We also found in another study that was performed by the same group that there's a lot of stress in the transgender people being a minority, and there are more depressive symptoms. I can't get into the details of this study, but this was quite impressive. This morning, I think we all heard this wonderful talk by Becky Rogers about expectations, about patients' expectations, probably also a little bit about our expectations. But I just want to speak for a minute or so about the expectations of transgender people in my clinic. My neighbor is a hairdresser, and when I talk to her, we find that our customers have similar expectations. She tells me people come to her shop and show a picture of Angelina Jolie and tell her, oh, I want to look like Angelina Jolie. And I have the same in my clinic. Sometimes particularly the younger ones come to my clinic and show me a picture of whoever and tell me, oh, doctor, I want to look like that. After my transition, I want this wonderful long hair. I want to be tall and slim. And these are two big expectations, I think. Probably we support the idea that we can do anything with surgery and hormonal treatment, and I think the media also do support it sometimes. We have to get the expectations realistically so that people are not disappointed after their transition. So what does it mean for a multidisciplinary team and quality of life? I come back to the quality of life domains. I think, and again, it took me about 10 years to form this team. It's not easy and it's a lot of work, but I can assure you it's really worth it. I think you need a physician, an endocrinologist for the hormonal treatment, a urologist. I'm very happy to have a physiotherapist in my team who's looking after pelvic floor problems after surgery, who can instruct with dilatations and can help the patient in everyday life immediately after the operation. The plastic surgeon or the surgeon who's performing the surgery, of course. I think for the section belonging, we need a psychologist and a psychiatrist. In Switzerland, transgender people do need a psychiatrist when we start the treatment, generally. A social worker can be of help if you think about the low income situation and the unemployment rate. A family doctor who helps treating and joining in the team is very helpful. Concerning the becoming, I think we need the pediatricians on board, a pediatric endocrinologist, psychologist and probably a social worker. And last but not least, I think you need a central person who feels responsible for the patient. Patients don't want 20 people where nobody is really responsible and caring for the patient. I think you need someone centrally with a good sense of humor, probably experience of life and good connections with the aforementioned. So how is our concept in Bern? We have a very linked cooperation with the children's hospital. In the children's hospital, usually subjects of 16 or less are seen. They grow older, they get transferred to my clinic and the children's hospital in Bern has an endocrinologist, a psychiatrist and a social worker, a psychologist and a pediatric urologist. When the patients become older, let's say 16 or 17, then they are transferred to my clinic and usually the first appointment is together with the psychologist, with the children's psychologist who knows the patient or who has known the patient for the past years. And we have the first meeting together. We take a lot of time for this first meeting with these people together, which will take about an hour or so. In the women's hospital, we have the endocrinologist, gynecologist, social worker. We have a psychiatrist and we are in cooperation with the department of urology. Of course, fertility issues have to be addressed in the younger ones, ideally before transition. Sometimes it's not possible, but they get counseling concerning future fertility and plastic surgery. Both the doctors in the children's hospital and in the women's hospital, we are part of a national network. We are doing studies together with the other university hospitals and we find it very fruitful to have a combination of various hospitals and we usually get a good number of patients who want to participate in the study. My patients in Bern, they are sometimes a little bit shy if it comes to studies. About one third is not too happy in participating in studies. One thing I have put here finally is a geriatrician. My patient, the group of patients in Bern, I have a large group of younger ones, let's say between 16 and 25, and I have about 20% of patients who are older than 75. I would love to have a geriatrician on board because if patients age, they get some age-related problems and are transgender. For the older people, it's very difficult, particularly when they have to go to a nursing home. Issues like that have to be discussed and I think also in the nursing homes, people have to be aware that transgender people exist with their special requirements. In conclusion, I think one person can impossibly deal with all the issues of transgender. We need a multidisciplinary team and I think it's also important to have a good transition from children, adolescents to adults. I think we have to address various aspects of quality of life like the physical, emotional and social well-being. I think we also have to be cautious because some of the patients are already traumatized being a minority and we also have to look at family and fertility aspects. Excusez-moi, vous pourriez la tenir une minute ? Bien sûr. Désolé, j'ai fini. Oh, c'est bon, les bisounours. J'ai terminé. Moi aussi.
Video Summary
The speaker starts by expressing their excitement to be at the event and introduces the topic of transgender health. They discuss the history of transgender health in Europe and the United States, noting key figures and surgeries that have contributed to the field. They highlight the moratorium on transgender surgeries in the United States in the late 1970s and the subsequent shift towards private practice surgeons performing these surgeries in the late 1980s and early 1990s. The speaker emphasizes the importance of gender-affirming care and the advancements made in the field in recent years, including the establishment of multidisciplinary care teams and the incorporation of transgender care into medical society programs. They also discuss the increase in research on transgender health in recent years. The speaker concludes by discussing the future of transgender health, including the training of gynecologic subspecialists and innovations in surgical techniques. They stress the importance of urologists and urogynecologists in providing gender-affirming surgeries and care. The speaker then introduces their colleagues and thanks the organizers for the opportunity to speak.
Asset Caption
Cecile A Ferrando, MD, MPH, Annette Kuhn, MD, Ervin Kocjancic, MD, Dmitriy Nikolavsky, MD
Keywords
transgender health
surgeries
gender-affirming care
advancements
research
medical society programs
gynecologic subspecialists
surgical techniques
urologists
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