Switching gender roles and occasionally pretending to be the opposite sex is common in young children. But for some kids, they feel certain they were born with the wrong bodies. For these kids and their families, access to individualized treatment can be hard to find.
Christopher Lewis MD, discusses The Washington University Transgender Center at St. Louis Children’s Hospital, and how it offers the only multidisciplinary care available to children and adolescents in the St. Louis region who identify as a gender different from the sex they were assigned at birth.
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The Washington University Transgender Center at St. Louis Children’s Hospital
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Learn more about Christopher Lewis, MD
Christopher Lewis, MD
Christopher Lewis MD, Washington University pediatric endocrinologist and director of the Transgender Center at St. Louis Children's Hospital.Learn more about Christopher Lewis, MD
Transcription:
The Washington University Transgender Center at St. Louis Children’s Hospital
Melanie Cole (Host): For transgender kids and their families, access to individualized treatment can be hard to find. My guest today is Dr. Christopher Lewis. He’s a Washington University Pediatric Endocrinologist and the Director of the Transgender Center at St. Louis Children’s Hospital. Dr. Lewis, on average, how many kids struggle with their identities in this country today?
Dr. Christopher Lewis, MD (Guest): Well, the Williams Institute recently published in January 2017 a demographic report that looked at the percent of individuals who identify as transgender and they broke it down by age and probably the patient population that I deal with the most is 13-24-year olds and they reported a percentage of about 0.7%. Now if you compare that to the overall entire population that changes to about 0.6%, so that’s about the same percentage as type I diabetes which is another condition I take care of all the time. So, when we go through medical school; every physician that graduates, knows a lot about type I diabetes but very little about transgender health.
Melanie: What an interesting way for you to put it because type I diabetes is something that seems to be more mainstream, but these kids and their families go through a really tough time sometimes. What are some of the challenges that you see most often?
Dr. Lewis: Well, from a social standpoint; one of the things I see is acceptance and support, not only from within their families but within their academic environment and community; which has a significant impact on their psychological wellbeing. A study coming out of British Columbia shows that given the right amount of psychosocial support, a lot of the health disparities that we see in the transgender population whether that be depression, suicidality, substance abuse, homelessness; those rates of those disparities normalize close to if not reaching the general population with just parental support and so, really that feeling of belonging and being a part of their society and their community has a huge impact on them. And that’s just looking at the psychological aspects of it. From a medical health standpoint, there is very little, like I was saying that doctors don’t graduate from medical school knowing a whole lot of the various aspects of transgender health. When someone goes to their primary care provider seeking advice and guidance; frequently the providers have little awareness of what are the issues that are affecting them, so medical competency is another huge disparity that affects every aspect of their life. So, much so that studies have shown that transgender patients avoid going to their doctors for preventative care and primary care concerns because of the fear of having to educate their physician, having to risk discrimination or harassment whether it be purposeful or not. And that has significant impact on their overall health outcomes.
Melanie: Dr. Lewis, you have a chance to educate physicians right now with some of the medical ills that transgender children and teens might even face. I mean there is breast cancer screening in transgender men. There is so many things as they grow into adulthood. So, use this time now. Discuss some of these things that you want pediatricians and other physicians to know about transgender and what some of the medical issues that they want to bring up, that they want to talk about.
Dr. Lewis: Well, a lot of them are wanting to know about what are their options for transitioning both from a social standpoint and from a medical standpoint which includes hormonal and surgical. Like I said, I don’t expect everyone to know all the nuances of transgender medicine and what options exist. But I think that primary care physicians should be aware of the resources that exist within their community and be able to provide referrals to either a physician that can talk about the various aspects of options related to transitioning and or legal or social advocacy support groups that can help patients link up with the resources that they need.
Melanie: So, what age should treatment begin? What do you want pediatricians to know about referral and what age should they be saying you know what, you need to now see an endocrinologist and get some of these things going?
Dr. Lewis: So, we see patients in our clinic. There is no minimum age. We do see patients following into their 26th year. So, when someone comes and see us that is prepubertal, meaning they haven’t yet started to show any signs of puberty; we will talk to them about what are their options in the future to the parents so that they know what to think and what to expect in the future if someone goes on to wanting hormone therapy. Not everyone that identifies as transgender wants to undergo hormonal or surgical intervention. But, they should be made aware about what their options are. And that’s sort of the role that we still at our transgender center is to provide that education so that patients and families can make the decision that is ultimately best for their family and their child. When they are first seeing someone, like I said if they are prepubertal; hormonal options are not really offered at that time. It is only once someone has actually started to show the signs of puberty; whether that be with physical exam or laboratory values or pubertal hormones; would we then consider offering a pubertal suppression agent which the purpose of which is to delay the onset of potentially irreversible secondary sexual characteristics that can be very difficult to erase such as changes in voice, Adams apple or breast development. Once someone has shown a degree of persistence, consistence and insistence and has met certain eligibility and readiness criteria; people do start to offer hormone therapy in the form of testosterone or estrogen therapy. Typically, that is not started until 14 or 16 years of age at the earliest and there’s a lot of criteria like I said that need to be met before someone can go down that route. In terms of surgical intervention; most surgical options that are available to them do not really come into play until 18 years of age.
Melanie: So, as long as you are talking about the transgender center, give us a little update on volume since the center opened. Make a connection with the overall need for the center of this nature with the volume of patients that you are seeing since it opened and what treatments and surgical procedures, therapies are you offering?
Dr. Lewis: So, we have been open since August 2017 and we were seeing transgender patients before that mixed into our general endocrine clinic. Since then, our referral rates have significantly skyrocketed. We are up to following about just over 200 patients and again, not all of them are on hormone therapy. Some of them just need access to resources or support groups or mental health providers. So, that is a role that we do play in the care of our patients is to make sure that they have the appropriate social and mental health support that’s required for them to be the most integral part of society that they can become. Outside of mental health and social support, we also do legal advocacy, helping to get gender marker changes, name changes, making sure that people can play on the sports teams or use the restrooms or locker rooms that they identify with. Furthermore, when it comes to hormone therapy; we like I said, we offer pubertal suppression agents, which give people not only the time to continue to explore what they may or may not want in the future, which like I said, may or may not involve testosterone or estrogen therapy but it gives them the time to explore this with their mental health professional, their parents and family members that help them make these decisions.
When we are going into testosterone or estrogen therapy, that’s when we start doing much closer monitoring of hormone levels and other chemistries and bone imaging studies to make sure that there is no negative or risks associated with the therapy or we minimize those that we do know that could be impacted such as bone health. We make sure that someone’s vitamin D, calcium and other bone markers as well as their bone age which is looking at the growth plates and the density of their bones are closely monitored while they are on pubertal suppression agents. When it comes to surgical interventions; no one in the clinic does actual surgery. I do implant placements, which is more so a procedure. An implant is a subcutaneous or just under the skin hormone device that will release a medicine that stops someone’s puberty. That’s the only procedure that we actually do offer in the clinic. When it comes to other surgical interventions; we rely closely with our surgical colleagues within gynecology, urology and plastic surgery in order to offer them services related to top or bottom surgery.
Melanie: So, in the last few minutes, Dr. Lewis, tell us a little bit about how you are measuring outcomes and what services does St. Louis Children’s Hospital have to aid pediatricians in these discussions with families, because that seems to be the place that most families would start and beginning that discussion whether it’s with your parents or with your pediatrician is, that’s really all encompassing and that’s probably one of the biggest things that these children go through. So, speak about how you are measuring the outcomes and how pediatricians can start that discussion.
Dr. Lewis: Well, there is right now there is paucity of data specifically in pediatric transgender health of really looking at outcomes. So, we have created an exhaustive list of variables that we are collecting and that we are going to be putting into a clinical database that will help hopefully us guide guidelines in the future. I know that there is a transgender research network that is – that’s a group of four large institutions that see many more transgender patients than we do that is currently doing significant work looking at outcomes. But like I said, we do know certain things to expect such as changes in lipid levels or changes in red blood cells and we monitor those closely, especially during the first year of therapy. We monitor every three months then after that as long as things continue to look well; we space to every six months or so.
When it comes to mental health outcomes; we are collecting data related to anxiety, depression, parental support, body image satisfaction and several other aspects of mental health that we are closely monitoring at every patient encounter. And in terms of things that pediatricians can do to help get more information when they have patients that have gender related concerns; our family resource center had a lot of information that we have created as a team in order to provide access to resources for our pediatricians. And frequently our pediatricians end up talking to me or one of the other team members directly about specific patient encounters that they have specific questions on. Because it’s hard to create a guideline for this kind of track because every patient is unique, and every patient’s care is individualized. So, there is no cookie cutter approach that we can really say oh yes this is what should happen in all patients of this age presenting with this concern. It really does take an art or a nuance that is required to deliver the best care for these patients. And so, that right now that does involve usually contacting us, letting us know what’s going on. Our clinical social worker who is also an LCSW or licensed clinical therapist can help triage and manage a lot of the acute things that a patient may encounter and then get them set up to see one of the providers in the clinic to delve into things a little bit more deeply.
Melanie: So, wrap it up for us. What would you like pediatricians and other physicians to know about the Washington University Transgender Center at St. Louis Children’s Hospital and what pediatricians can expect as far as referral and communication if they do refer?
Dr. Lewis: When someone is calling and contacting us to request a referral; usually they will speak to our social worker first where she will triage the patient, see exactly what their care and needs are and then help direct them to the appropriate provider. Whether that is to talk to me about specifically hormone therapy or talk to another provider where they may need to explore things more closely related to mental health concerns. Once a patient has been seen by us in the clinic; we will be in communication with our clinical documentation and addressing other concerns directly with the primary provider.
Melanie: Thank you so much Dr. Lewis, for being with us today. St. Louis Children’s Hospital’s Family Resource Center also offers free educational materials regarding these and other developmental topics. You can reach the Family Resource Center at 314-454-2350. A physician can refer a patient by calling Children’s direct physician access line at 1-800-678-HELP, that’s 1-800-678-4357. You’re listening to Radio Rounds with St. Louis Children’s Hospital. For more information on resources available at St. Louis Children’s Hospital you can go to www.stlouischildrens.org that’s www.stlouischildrens.org . This is Melanie Cole. Thanks so much for listening.
The Washington University Transgender Center at St. Louis Children’s Hospital
Melanie Cole (Host): For transgender kids and their families, access to individualized treatment can be hard to find. My guest today is Dr. Christopher Lewis. He’s a Washington University Pediatric Endocrinologist and the Director of the Transgender Center at St. Louis Children’s Hospital. Dr. Lewis, on average, how many kids struggle with their identities in this country today?
Dr. Christopher Lewis, MD (Guest): Well, the Williams Institute recently published in January 2017 a demographic report that looked at the percent of individuals who identify as transgender and they broke it down by age and probably the patient population that I deal with the most is 13-24-year olds and they reported a percentage of about 0.7%. Now if you compare that to the overall entire population that changes to about 0.6%, so that’s about the same percentage as type I diabetes which is another condition I take care of all the time. So, when we go through medical school; every physician that graduates, knows a lot about type I diabetes but very little about transgender health.
Melanie: What an interesting way for you to put it because type I diabetes is something that seems to be more mainstream, but these kids and their families go through a really tough time sometimes. What are some of the challenges that you see most often?
Dr. Lewis: Well, from a social standpoint; one of the things I see is acceptance and support, not only from within their families but within their academic environment and community; which has a significant impact on their psychological wellbeing. A study coming out of British Columbia shows that given the right amount of psychosocial support, a lot of the health disparities that we see in the transgender population whether that be depression, suicidality, substance abuse, homelessness; those rates of those disparities normalize close to if not reaching the general population with just parental support and so, really that feeling of belonging and being a part of their society and their community has a huge impact on them. And that’s just looking at the psychological aspects of it. From a medical health standpoint, there is very little, like I was saying that doctors don’t graduate from medical school knowing a whole lot of the various aspects of transgender health. When someone goes to their primary care provider seeking advice and guidance; frequently the providers have little awareness of what are the issues that are affecting them, so medical competency is another huge disparity that affects every aspect of their life. So, much so that studies have shown that transgender patients avoid going to their doctors for preventative care and primary care concerns because of the fear of having to educate their physician, having to risk discrimination or harassment whether it be purposeful or not. And that has significant impact on their overall health outcomes.
Melanie: Dr. Lewis, you have a chance to educate physicians right now with some of the medical ills that transgender children and teens might even face. I mean there is breast cancer screening in transgender men. There is so many things as they grow into adulthood. So, use this time now. Discuss some of these things that you want pediatricians and other physicians to know about transgender and what some of the medical issues that they want to bring up, that they want to talk about.
Dr. Lewis: Well, a lot of them are wanting to know about what are their options for transitioning both from a social standpoint and from a medical standpoint which includes hormonal and surgical. Like I said, I don’t expect everyone to know all the nuances of transgender medicine and what options exist. But I think that primary care physicians should be aware of the resources that exist within their community and be able to provide referrals to either a physician that can talk about the various aspects of options related to transitioning and or legal or social advocacy support groups that can help patients link up with the resources that they need.
Melanie: So, what age should treatment begin? What do you want pediatricians to know about referral and what age should they be saying you know what, you need to now see an endocrinologist and get some of these things going?
Dr. Lewis: So, we see patients in our clinic. There is no minimum age. We do see patients following into their 26th year. So, when someone comes and see us that is prepubertal, meaning they haven’t yet started to show any signs of puberty; we will talk to them about what are their options in the future to the parents so that they know what to think and what to expect in the future if someone goes on to wanting hormone therapy. Not everyone that identifies as transgender wants to undergo hormonal or surgical intervention. But, they should be made aware about what their options are. And that’s sort of the role that we still at our transgender center is to provide that education so that patients and families can make the decision that is ultimately best for their family and their child. When they are first seeing someone, like I said if they are prepubertal; hormonal options are not really offered at that time. It is only once someone has actually started to show the signs of puberty; whether that be with physical exam or laboratory values or pubertal hormones; would we then consider offering a pubertal suppression agent which the purpose of which is to delay the onset of potentially irreversible secondary sexual characteristics that can be very difficult to erase such as changes in voice, Adams apple or breast development. Once someone has shown a degree of persistence, consistence and insistence and has met certain eligibility and readiness criteria; people do start to offer hormone therapy in the form of testosterone or estrogen therapy. Typically, that is not started until 14 or 16 years of age at the earliest and there’s a lot of criteria like I said that need to be met before someone can go down that route. In terms of surgical intervention; most surgical options that are available to them do not really come into play until 18 years of age.
Melanie: So, as long as you are talking about the transgender center, give us a little update on volume since the center opened. Make a connection with the overall need for the center of this nature with the volume of patients that you are seeing since it opened and what treatments and surgical procedures, therapies are you offering?
Dr. Lewis: So, we have been open since August 2017 and we were seeing transgender patients before that mixed into our general endocrine clinic. Since then, our referral rates have significantly skyrocketed. We are up to following about just over 200 patients and again, not all of them are on hormone therapy. Some of them just need access to resources or support groups or mental health providers. So, that is a role that we do play in the care of our patients is to make sure that they have the appropriate social and mental health support that’s required for them to be the most integral part of society that they can become. Outside of mental health and social support, we also do legal advocacy, helping to get gender marker changes, name changes, making sure that people can play on the sports teams or use the restrooms or locker rooms that they identify with. Furthermore, when it comes to hormone therapy; we like I said, we offer pubertal suppression agents, which give people not only the time to continue to explore what they may or may not want in the future, which like I said, may or may not involve testosterone or estrogen therapy but it gives them the time to explore this with their mental health professional, their parents and family members that help them make these decisions.
When we are going into testosterone or estrogen therapy, that’s when we start doing much closer monitoring of hormone levels and other chemistries and bone imaging studies to make sure that there is no negative or risks associated with the therapy or we minimize those that we do know that could be impacted such as bone health. We make sure that someone’s vitamin D, calcium and other bone markers as well as their bone age which is looking at the growth plates and the density of their bones are closely monitored while they are on pubertal suppression agents. When it comes to surgical interventions; no one in the clinic does actual surgery. I do implant placements, which is more so a procedure. An implant is a subcutaneous or just under the skin hormone device that will release a medicine that stops someone’s puberty. That’s the only procedure that we actually do offer in the clinic. When it comes to other surgical interventions; we rely closely with our surgical colleagues within gynecology, urology and plastic surgery in order to offer them services related to top or bottom surgery.
Melanie: So, in the last few minutes, Dr. Lewis, tell us a little bit about how you are measuring outcomes and what services does St. Louis Children’s Hospital have to aid pediatricians in these discussions with families, because that seems to be the place that most families would start and beginning that discussion whether it’s with your parents or with your pediatrician is, that’s really all encompassing and that’s probably one of the biggest things that these children go through. So, speak about how you are measuring the outcomes and how pediatricians can start that discussion.
Dr. Lewis: Well, there is right now there is paucity of data specifically in pediatric transgender health of really looking at outcomes. So, we have created an exhaustive list of variables that we are collecting and that we are going to be putting into a clinical database that will help hopefully us guide guidelines in the future. I know that there is a transgender research network that is – that’s a group of four large institutions that see many more transgender patients than we do that is currently doing significant work looking at outcomes. But like I said, we do know certain things to expect such as changes in lipid levels or changes in red blood cells and we monitor those closely, especially during the first year of therapy. We monitor every three months then after that as long as things continue to look well; we space to every six months or so.
When it comes to mental health outcomes; we are collecting data related to anxiety, depression, parental support, body image satisfaction and several other aspects of mental health that we are closely monitoring at every patient encounter. And in terms of things that pediatricians can do to help get more information when they have patients that have gender related concerns; our family resource center had a lot of information that we have created as a team in order to provide access to resources for our pediatricians. And frequently our pediatricians end up talking to me or one of the other team members directly about specific patient encounters that they have specific questions on. Because it’s hard to create a guideline for this kind of track because every patient is unique, and every patient’s care is individualized. So, there is no cookie cutter approach that we can really say oh yes this is what should happen in all patients of this age presenting with this concern. It really does take an art or a nuance that is required to deliver the best care for these patients. And so, that right now that does involve usually contacting us, letting us know what’s going on. Our clinical social worker who is also an LCSW or licensed clinical therapist can help triage and manage a lot of the acute things that a patient may encounter and then get them set up to see one of the providers in the clinic to delve into things a little bit more deeply.
Melanie: So, wrap it up for us. What would you like pediatricians and other physicians to know about the Washington University Transgender Center at St. Louis Children’s Hospital and what pediatricians can expect as far as referral and communication if they do refer?
Dr. Lewis: When someone is calling and contacting us to request a referral; usually they will speak to our social worker first where she will triage the patient, see exactly what their care and needs are and then help direct them to the appropriate provider. Whether that is to talk to me about specifically hormone therapy or talk to another provider where they may need to explore things more closely related to mental health concerns. Once a patient has been seen by us in the clinic; we will be in communication with our clinical documentation and addressing other concerns directly with the primary provider.
Melanie: Thank you so much Dr. Lewis, for being with us today. St. Louis Children’s Hospital’s Family Resource Center also offers free educational materials regarding these and other developmental topics. You can reach the Family Resource Center at 314-454-2350. A physician can refer a patient by calling Children’s direct physician access line at 1-800-678-HELP, that’s 1-800-678-4357. You’re listening to Radio Rounds with St. Louis Children’s Hospital. For more information on resources available at St. Louis Children’s Hospital you can go to www.stlouischildrens.org that’s www.stlouischildrens.org . This is Melanie Cole. Thanks so much for listening.