Transitioning Patients with Congenital Conditions for Long-term Care
From the Show: Northwestern Medicine - Peer
Summary:
Air Date: 3/18/20
Duration: 10 Minutes
Stephanie Kielb MD and Diana Bowen MD discuss Northwestern Medicine’s adult multidisciplinary Transitional Urology Program. They discuss a study that summarized perceptions and best practices for the care of adult spina bifida patients. They also share top recommendations for physicians or healthcare providers to consider when creating a successful transition experience and monitoring adults with these conditions, and how best to serve these populations most effectively.
Transcription:
Melanie Cole (Host): Welcome. This is Better Edge, a Northwestern Medicine Podcast for physicians. I’m Melanie Cole and today we’re discussing the Transitional Urology Program at Northwestern Medicine. Joining me in this panel are Dr. Stephanie Kielb, she’s the Chief of Reconstruction and Neurourology and a Professor of Urology Medical Education and Obstetrics and Gynecology at Northwestern Medicine. And Dr. Diana Bowen, she’s an Assistant Professor of Urology at Northwestern Medicine. Doctors, I’m so glad to have you join us today. so, I’d like you both to start by describing your background and training in this field for us. Why is this type of training important when you are caring for these patients? Dr. Bowen, why don’t you start for us.
Diana Bowen, MD (Guest): Sure. So, thanks for having us. My background in urology really actually starts at Michigan. Stephanie might actually talk about that too, but we have roots there. And that was where I was first exposed to patients from the kind of complex care population that we’re going to talk about, spina bifida patients and others and I as a medical student, really learned to kind of love the reconstructive aspect of their care and also just taking care of their medical problems as well. And then I went on to Northwestern and trained there as a resident and went on to Philadelphia and did a pediatrics fellowship and when I was presented with the opportunity to come back to Northwestern; it was really exciting because it was to take care of these patients that I’d first seen and met over a decade before. And I think the training that both Northwestern and the Children’s Hospital in Philadelphia gave me in complex reconstruction and management of patients who just have a lot going on urologically; made this an ideal job and of course the opportunity to collaborate with Stephanie who had trained me back in residency was also too hard to pass up. So, that’s my background and I just feel really fortunate to be able to take care of such wonderful and heterogeneous population of patients that really need care and can’t often get the care they need.
Stephanie Kielb, MD (Guest): Thank you Dr. Bowen. I appreciate that shout out. So, I initially trained in urology at the University of Michigan and while I was there, I worked with a very famous urologist named Ed McGuire who is kind of one of the leaders of kind of Neurourology which is kind of the lead part of what we’re doing talking about these patients and we took care of a lot of patients with these congenital conditions that patients were born with as they kind of grew through pediatrics and then into adulthood. And so as a urologist by background I also have a subspecialty certification in what’s called female pelvic medicine and reconstructive surgery which also involves managing patients with not only urinary continence issues, but pelvic organ prolapse which is actually something that affects a lot of these patients into adulthood, the female patients into adulthood.
I think it’s really important from a training standpoint that these patients are cared for by urologists as kind of a leader in these sorts of clinics and the main reason is because many of these patients have very complex conditions and the bladder function and bladder management is key to preserving renal function in these patients and both Dr. Bowen and I have a background in managing and evaluating this as well as managing their reconstructions, their complex reconstructions involving bowel, involving catheterizable channels that really no one other than a urologist is capable of managing.
In addition, with Dr. Bowen’s pediatric training and my training in female pelvic medicine; we can pretty much manage many, many of their conditions including prolapse issues, reproductive issues, and urinary issues and also help bring a team together to manage other issues such as bowel issues and things like that.
Host: Well thank you both and Dr. Bowen, why is transitioning pediatric patients with chronic and congenital conditions to adult care been a challenge in the past? What have been some of the barriers that you’ve seen?
Dr. Bowen: Yeah so, transitional care is really only come to the forefront in the last I would say two decades. And before that, there were really – there was really no thought to how to effectively transition these patients. And so, we’re really kind of playing catch up. There are a lot of barriers unfortunately. If we think about the primary goal of transition is to provide uninterrupted care for patients as they transfer their care to an adult setting; seems like a simple concept, but there are a lot of obstacles these patients face. Not only just the physical location being different, but first think about how heterogeneous these patients are we care for. So, Stephanie mentioned a lot of them it leads to a bladder that we need to manage to make sure that the kidneys are protected. We that comes from a lot of different areas and these patients may need to see neurosurgery, may need to see nephrology and they may have had a full team in their pediatric setting but often that adult care is lacking in having all of the different components that they had in their pediatric care.
So, that’s just one issue. Insurance may be a hurdle. Historically, children specifically with congenital urologic defects have had access to comprehensive care but that same access hasn’t been there for adults with the same conditions and I think we’re making strides there, but there’s still a remarkably high rate of adults who fail to kind of go through this transition period. There’s a question that social work support and care coordination to help patients navigate the complex healthcare system is really important and that lines of communication stay open between pediatrics and adults.
So, I think that’s one of the barriers and one of the nice things about our program is that by pairing a pediatric and an adult urologist and I still have my foot in the door at the Children’s Hospital; we’re really keeping that communication open and hoping that patients don’t fall through these cracks that they have been previously.
Dr. Kielb: Yeah and in addition, I think there’s studies have shown that one of the barriers that patients note is there just aren’t a lot of adult providers that are capable and willing to take care of these very complicated patients. So, that’s why having our clinic and having it available is so important so the patients can find the care that they need in this sort of situation.
Host: Well it certainly is a very comprehensive approach that’s needed. So, Dr. Kielb, if you were recommending to other providers that are considering creating a successful transition experience and monitoring adults with these conditions; how would you tell them to serve these populations most effectively? For example, the optimal transitional age or essential services and treatment availability that you would want them to have.
Dr. Kielb: Well I think the optimal age is going to vary by patient. The important thing about transition and the things that we know about transition is that the worst time to transition a patient is during an acute problematic episode, some urgent situation. Which unfortunately maybe what happens if the patients have kind of aged out of a pediatric hospital and end up in an adult emergency room. So, I think preparation is very key. Talking to the patients and their families. Usually starting somewhere around age 12 and this is going to be a slow introduction and introducing them to the care providers that will be taking care of them on the adult side. We don’t want to rush patients; we want to make sure they understand the reasons for this. And most patients will transition somewhere between age 18 and 24 depending again on the patient and on the family situation.
So, it’s just very important that the patients are prepared for this and they are not feeling like they’re being pushed out of the clinic or dumped somewhere. But it’s also incredibly important that the patients also get a lot of their own records so that they have them because being with Dr. Bowen and Lurie Children’s we can talk back and forth but if the patient is coming for instance from the Shriners Hospital, I don’t have access to any of the records. So, if the patients and their families can get copies of particularly thing like their operative reports and imaging studies and the more information that they have when they come to our clinic or send to our clinic; the better we can care for them, the better we can know what happened in the past so we are prepared to take care of them going forward.
I think if outside providers want to continue to care for these patients; I think it’s important that they have a good knowledge of all the complex issues that the patients can experience and oftentimes, I’ll partner with other adult providers particularly if the patient lives many hours away but I will be a resource for them, I will see the patients regularly but maybe when there’s acute issues some providers out in the community that are hours away can help to manage and can contact myself or Dr. Bowen if they have questions or concerns. I mean we want to be involved in their care, but we understand coming all the way to Northwestern sometimes isn’t ideal, but we do partner with a lot of urologists in the community to kind of really try and care for these patients as best as possible.
Dr. Bowen: Yeah, and just to add to that, I think like as Stephanie was saying, we want them to be ready to commit to self-management before their transition and so that’s something that we’re trying to do on the pediatric side, understanding that success depends on their readiness so instituting things in your clinic like questionnaires, patient reported outcomes, readiness for self-management can really help you individualize what patient can go to an adult hospital at age 18 versus 20 and so on. And so I think that’s an important thing that we really are starting to turn the page on is understanding from the patient perspective where they are.
Host: Good points, all Doctors. Dr. Kielb, you recently published a study that summarized perceptions and best practices for the care of adult spina bifida patients. Please give us a brief overview of your research and share your findings if you would.
Dr. Kielb: Yeah, I think that this area of study is very interesting. I mean we have ongoing studies evaluating adult spina bifida patients and some other conditions as well. I think that the important thing is that they have regular follow up with the urologist that knowledgeable of their condition. They do need to have regular imaging. They need to have regular labwork. And we do have to monitor their kidney function. It’s very important to recognize the types of needs that these patients have in fact our study showed that the most common type of procedure our adult spina bifida patients will undergo is a stone procedure. Which urologists obviously are qualified to manage. But the other procedures we see in the adult population are incontinence procedures so some of the things that become very important in the adult world like maintaining continence may have been less focused on in pediatrics but when they get into the adult world, it’s very important for them for their work standpoint, school standpoint and so we do manage those patients and offer them different things that may help them become continent if that’s one of their goals.
So, there’s a lot of research going on. We also looked at the incidence of pelvic organ prolapse in the adult spina bifida population and found it’s significantly higher in this population at a younger age and in patients that are nulliparous, they can have very advanced prolapse compared to the general population where you really don’t see advanced prolapse in nulliparous patients in general.
Host: Dr. Bowen, tell us a little bit about Northwestern Medicine’s adult multidisciplinary transitional urology program. Why is what you do so important and what are you doing at Northwestern that’s really unique? Tell us about this multidisciplinary approach. We’ve mentioned it a few times in this podcast but reiterate it for us. Tell us who’s involved.
Dr. Bowen: So, I think we’ve teamed up to kind of create a space for these patients where there hasn’t been one before and probably been overlooked in our specialty and other specialties. And so Stephanie has provided care for a long time for these patients. What we’ve tried to do is kind of shore up the front end with the pediatric transition by myself being in the clinic and understanding some of the complex surgeries that we may do and issues and then we said okay we need a whole umbrella of folks to help take care of all of the multiple issues that these patients have from renal dysfunction, from neurosurgical concerns, from GI concerns and you have to be passionate about this to be part of our clinic. And so we found a lot of passionate people to be engaged.
It's a unique partnership that Dr. Kielb and I have. There are not too many clinics where you are able to commit a pediatric and adult urologist together in the same space, but I think that shows Northwestern and Lurie Children’s resolve to help this patient population. Care for congenital conditions is tricky and so it requires an adult skill set and knowledge of congenital conditions and a pediatric skill set and so I think that really sets us apart in our commitment to these patients.
Dr. Kielb: And our team includes several colorectal surgeons and physicians as well, a nephrologist. We have a physiatrist which is a physical medicine and rehab physician. We have a plastic surgeon. We have gynecologists committed to these patients so it’s a really multispecialty team with excellent knowledge of a variety of conditions to really help us optimize their care.
Host: Dr. Kielb as we wrap up, what’s next when it comes to this area of study? What would you like other providers to know about your research or referring patients to you? Give us a nice wrap up.
Dr. Kielb: So, I think the important thing about these patients is that I think that these patients are there, and we know that there’s many of them out there who haven’t found us yet that are struggling to find providers that are knowledgeable and able and willing to care for them. So, it’s really important that if these patients are in their clinics or in their population that they are aware that this clinic exists, and it is available for these patients. We are really a patient focused clinic, so the research that we are doing at this point, like Dr. Bowen mentioned earlier is looking at sort of the patient perspective. What do the patients want? What do the patients need? We want to have – we are going to have a sort of a peer to peer meet of a lot of these patients coming to really gather from the patients how we can better care for them. Because the truth is, nobody really knows for sure. These clinics didn’t exist in the past. Many of these conditions patients didn’t make it to adulthood in the past. So, this is kind of a new area of study. It’s an exciting area of study. It’s a very complex group but a group of patients that are incredibly thankful and incredibly welcoming to someone that’s very knowledgeable about their condition. Because many of them are struggling to find adult providers.
So, our clinic, we want to make it easy for patients to get to. We have a direct phone number. I’m happy to take calls. I mean I’m happy to assist so we want to make this clinic available to as many patients as need us.
Host: Thank you so much Doctors for joining us today and sharing your incredible expertise. What a great topic and a great program that you have at Northwestern Medicine. And that concludes this episode of Better Edge a Northwestern Medicine Podcast for physicians. To refer your patient or for more information on the latest advances in medicine, please visit our website at www.nm.org to get connected with one of our providers. Please also remember to subscribe, rate and review this podcast and all the other Northwestern Medicine podcasts. For more health tips and updates please follow us on your social channels. I’m Melanie Cole.
Melanie Cole (Host): Welcome. This is Better Edge, a Northwestern Medicine Podcast for physicians. I’m Melanie Cole and today we’re discussing the Transitional Urology Program at Northwestern Medicine. Joining me in this panel are Dr. Stephanie Kielb, she’s the Chief of Reconstruction and Neurourology and a Professor of Urology Medical Education and Obstetrics and Gynecology at Northwestern Medicine. And Dr. Diana Bowen, she’s an Assistant Professor of Urology at Northwestern Medicine. Doctors, I’m so glad to have you join us today. so, I’d like you both to start by describing your background and training in this field for us. Why is this type of training important when you are caring for these patients? Dr. Bowen, why don’t you start for us.
Diana Bowen, MD (Guest): Sure. So, thanks for having us. My background in urology really actually starts at Michigan. Stephanie might actually talk about that too, but we have roots there. And that was where I was first exposed to patients from the kind of complex care population that we’re going to talk about, spina bifida patients and others and I as a medical student, really learned to kind of love the reconstructive aspect of their care and also just taking care of their medical problems as well. And then I went on to Northwestern and trained there as a resident and went on to Philadelphia and did a pediatrics fellowship and when I was presented with the opportunity to come back to Northwestern; it was really exciting because it was to take care of these patients that I’d first seen and met over a decade before. And I think the training that both Northwestern and the Children’s Hospital in Philadelphia gave me in complex reconstruction and management of patients who just have a lot going on urologically; made this an ideal job and of course the opportunity to collaborate with Stephanie who had trained me back in residency was also too hard to pass up. So, that’s my background and I just feel really fortunate to be able to take care of such wonderful and heterogeneous population of patients that really need care and can’t often get the care they need.
Stephanie Kielb, MD (Guest): Thank you Dr. Bowen. I appreciate that shout out. So, I initially trained in urology at the University of Michigan and while I was there, I worked with a very famous urologist named Ed McGuire who is kind of one of the leaders of kind of Neurourology which is kind of the lead part of what we’re doing talking about these patients and we took care of a lot of patients with these congenital conditions that patients were born with as they kind of grew through pediatrics and then into adulthood. And so as a urologist by background I also have a subspecialty certification in what’s called female pelvic medicine and reconstructive surgery which also involves managing patients with not only urinary continence issues, but pelvic organ prolapse which is actually something that affects a lot of these patients into adulthood, the female patients into adulthood.
I think it’s really important from a training standpoint that these patients are cared for by urologists as kind of a leader in these sorts of clinics and the main reason is because many of these patients have very complex conditions and the bladder function and bladder management is key to preserving renal function in these patients and both Dr. Bowen and I have a background in managing and evaluating this as well as managing their reconstructions, their complex reconstructions involving bowel, involving catheterizable channels that really no one other than a urologist is capable of managing.
In addition, with Dr. Bowen’s pediatric training and my training in female pelvic medicine; we can pretty much manage many, many of their conditions including prolapse issues, reproductive issues, and urinary issues and also help bring a team together to manage other issues such as bowel issues and things like that.
Host: Well thank you both and Dr. Bowen, why is transitioning pediatric patients with chronic and congenital conditions to adult care been a challenge in the past? What have been some of the barriers that you’ve seen?
Dr. Bowen: Yeah so, transitional care is really only come to the forefront in the last I would say two decades. And before that, there were really – there was really no thought to how to effectively transition these patients. And so, we’re really kind of playing catch up. There are a lot of barriers unfortunately. If we think about the primary goal of transition is to provide uninterrupted care for patients as they transfer their care to an adult setting; seems like a simple concept, but there are a lot of obstacles these patients face. Not only just the physical location being different, but first think about how heterogeneous these patients are we care for. So, Stephanie mentioned a lot of them it leads to a bladder that we need to manage to make sure that the kidneys are protected. We that comes from a lot of different areas and these patients may need to see neurosurgery, may need to see nephrology and they may have had a full team in their pediatric setting but often that adult care is lacking in having all of the different components that they had in their pediatric care.
So, that’s just one issue. Insurance may be a hurdle. Historically, children specifically with congenital urologic defects have had access to comprehensive care but that same access hasn’t been there for adults with the same conditions and I think we’re making strides there, but there’s still a remarkably high rate of adults who fail to kind of go through this transition period. There’s a question that social work support and care coordination to help patients navigate the complex healthcare system is really important and that lines of communication stay open between pediatrics and adults.
So, I think that’s one of the barriers and one of the nice things about our program is that by pairing a pediatric and an adult urologist and I still have my foot in the door at the Children’s Hospital; we’re really keeping that communication open and hoping that patients don’t fall through these cracks that they have been previously.
Dr. Kielb: Yeah and in addition, I think there’s studies have shown that one of the barriers that patients note is there just aren’t a lot of adult providers that are capable and willing to take care of these very complicated patients. So, that’s why having our clinic and having it available is so important so the patients can find the care that they need in this sort of situation.
Host: Well it certainly is a very comprehensive approach that’s needed. So, Dr. Kielb, if you were recommending to other providers that are considering creating a successful transition experience and monitoring adults with these conditions; how would you tell them to serve these populations most effectively? For example, the optimal transitional age or essential services and treatment availability that you would want them to have.
Dr. Kielb: Well I think the optimal age is going to vary by patient. The important thing about transition and the things that we know about transition is that the worst time to transition a patient is during an acute problematic episode, some urgent situation. Which unfortunately maybe what happens if the patients have kind of aged out of a pediatric hospital and end up in an adult emergency room. So, I think preparation is very key. Talking to the patients and their families. Usually starting somewhere around age 12 and this is going to be a slow introduction and introducing them to the care providers that will be taking care of them on the adult side. We don’t want to rush patients; we want to make sure they understand the reasons for this. And most patients will transition somewhere between age 18 and 24 depending again on the patient and on the family situation.
So, it’s just very important that the patients are prepared for this and they are not feeling like they’re being pushed out of the clinic or dumped somewhere. But it’s also incredibly important that the patients also get a lot of their own records so that they have them because being with Dr. Bowen and Lurie Children’s we can talk back and forth but if the patient is coming for instance from the Shriners Hospital, I don’t have access to any of the records. So, if the patients and their families can get copies of particularly thing like their operative reports and imaging studies and the more information that they have when they come to our clinic or send to our clinic; the better we can care for them, the better we can know what happened in the past so we are prepared to take care of them going forward.
I think if outside providers want to continue to care for these patients; I think it’s important that they have a good knowledge of all the complex issues that the patients can experience and oftentimes, I’ll partner with other adult providers particularly if the patient lives many hours away but I will be a resource for them, I will see the patients regularly but maybe when there’s acute issues some providers out in the community that are hours away can help to manage and can contact myself or Dr. Bowen if they have questions or concerns. I mean we want to be involved in their care, but we understand coming all the way to Northwestern sometimes isn’t ideal, but we do partner with a lot of urologists in the community to kind of really try and care for these patients as best as possible.
Dr. Bowen: Yeah, and just to add to that, I think like as Stephanie was saying, we want them to be ready to commit to self-management before their transition and so that’s something that we’re trying to do on the pediatric side, understanding that success depends on their readiness so instituting things in your clinic like questionnaires, patient reported outcomes, readiness for self-management can really help you individualize what patient can go to an adult hospital at age 18 versus 20 and so on. And so I think that’s an important thing that we really are starting to turn the page on is understanding from the patient perspective where they are.
Host: Good points, all Doctors. Dr. Kielb, you recently published a study that summarized perceptions and best practices for the care of adult spina bifida patients. Please give us a brief overview of your research and share your findings if you would.
Dr. Kielb: Yeah, I think that this area of study is very interesting. I mean we have ongoing studies evaluating adult spina bifida patients and some other conditions as well. I think that the important thing is that they have regular follow up with the urologist that knowledgeable of their condition. They do need to have regular imaging. They need to have regular labwork. And we do have to monitor their kidney function. It’s very important to recognize the types of needs that these patients have in fact our study showed that the most common type of procedure our adult spina bifida patients will undergo is a stone procedure. Which urologists obviously are qualified to manage. But the other procedures we see in the adult population are incontinence procedures so some of the things that become very important in the adult world like maintaining continence may have been less focused on in pediatrics but when they get into the adult world, it’s very important for them for their work standpoint, school standpoint and so we do manage those patients and offer them different things that may help them become continent if that’s one of their goals.
So, there’s a lot of research going on. We also looked at the incidence of pelvic organ prolapse in the adult spina bifida population and found it’s significantly higher in this population at a younger age and in patients that are nulliparous, they can have very advanced prolapse compared to the general population where you really don’t see advanced prolapse in nulliparous patients in general.
Host: Dr. Bowen, tell us a little bit about Northwestern Medicine’s adult multidisciplinary transitional urology program. Why is what you do so important and what are you doing at Northwestern that’s really unique? Tell us about this multidisciplinary approach. We’ve mentioned it a few times in this podcast but reiterate it for us. Tell us who’s involved.
Dr. Bowen: So, I think we’ve teamed up to kind of create a space for these patients where there hasn’t been one before and probably been overlooked in our specialty and other specialties. And so Stephanie has provided care for a long time for these patients. What we’ve tried to do is kind of shore up the front end with the pediatric transition by myself being in the clinic and understanding some of the complex surgeries that we may do and issues and then we said okay we need a whole umbrella of folks to help take care of all of the multiple issues that these patients have from renal dysfunction, from neurosurgical concerns, from GI concerns and you have to be passionate about this to be part of our clinic. And so we found a lot of passionate people to be engaged.
It's a unique partnership that Dr. Kielb and I have. There are not too many clinics where you are able to commit a pediatric and adult urologist together in the same space, but I think that shows Northwestern and Lurie Children’s resolve to help this patient population. Care for congenital conditions is tricky and so it requires an adult skill set and knowledge of congenital conditions and a pediatric skill set and so I think that really sets us apart in our commitment to these patients.
Dr. Kielb: And our team includes several colorectal surgeons and physicians as well, a nephrologist. We have a physiatrist which is a physical medicine and rehab physician. We have a plastic surgeon. We have gynecologists committed to these patients so it’s a really multispecialty team with excellent knowledge of a variety of conditions to really help us optimize their care.
Host: Dr. Kielb as we wrap up, what’s next when it comes to this area of study? What would you like other providers to know about your research or referring patients to you? Give us a nice wrap up.
Dr. Kielb: So, I think the important thing about these patients is that I think that these patients are there, and we know that there’s many of them out there who haven’t found us yet that are struggling to find providers that are knowledgeable and able and willing to care for them. So, it’s really important that if these patients are in their clinics or in their population that they are aware that this clinic exists, and it is available for these patients. We are really a patient focused clinic, so the research that we are doing at this point, like Dr. Bowen mentioned earlier is looking at sort of the patient perspective. What do the patients want? What do the patients need? We want to have – we are going to have a sort of a peer to peer meet of a lot of these patients coming to really gather from the patients how we can better care for them. Because the truth is, nobody really knows for sure. These clinics didn’t exist in the past. Many of these conditions patients didn’t make it to adulthood in the past. So, this is kind of a new area of study. It’s an exciting area of study. It’s a very complex group but a group of patients that are incredibly thankful and incredibly welcoming to someone that’s very knowledgeable about their condition. Because many of them are struggling to find adult providers.
So, our clinic, we want to make it easy for patients to get to. We have a direct phone number. I’m happy to take calls. I mean I’m happy to assist so we want to make this clinic available to as many patients as need us.
Host: Thank you so much Doctors for joining us today and sharing your incredible expertise. What a great topic and a great program that you have at Northwestern Medicine. And that concludes this episode of Better Edge a Northwestern Medicine Podcast for physicians. To refer your patient or for more information on the latest advances in medicine, please visit our website at www.nm.org to get connected with one of our providers. Please also remember to subscribe, rate and review this podcast and all the other Northwestern Medicine podcasts. For more health tips and updates please follow us on your social channels. I’m Melanie Cole.
