Transcription:
Clinical Update: Spina Bifida

Melanie Cole, MS (Host): Welcome to Better Edge, a Northwestern Medicine podcast for physicians. I'm your host, Melanie Cole. And today, we're discussing the clinical management of adults with spina bifida. We have three expert guests from the Northwestern Medicine Spina Bifida Clinic joining us today: Dr. Diana Bowen, she's a urologist; Dr. Stephanie Hendrick, she's a physiatrist that's board-certified in spinal cord injury medicine; and Mara Markzon, she's a clinical social worker.

Welcome, Dr. Bowen, Dr. Hendrick and Mara. Thank you all for being with us today. Dr. Bowen, I'd like to start with you. You're a team member from the urology side of the multidisciplinary Spina Bifida Clinic that recently launched at Northwestern Medicine. Tell us a little bit about the clinic. You involve many specialties. Tell us about this combined clinic. What are you finding are the largest benefits and why is a multidisciplinary team so important for these patient?

Diana Bowen, MD: Sure. Thanks for having us. So, you know, the key components to the Adult Spina Bifida Clinic are the providers that matter most in adult spina bifida care. And this is what patients have told us and what we've gained from experience. So, the providers in our clinic are urologists, physiatrists and, probably most important, our social worker, to really give our patients comprehensive care that is collaborative. And these specialties are important because as patients age into adulthood with spina bifida, their medical and surgical care kind of shifts from being focused in the neurosurgical and orthopedic worlds to a focus on ongoing management of quality of life issues like the bladder, the bowels, and mobility concerns.

Obviously, these other aspects of care don't just disappear, and that's why we have a clinic that is a physical space with our providers that I just mentioned, but we also have a network of providers at Northwestern outside of those just physically present, like adult neurosurgeons and nephrologists, GI doctors, colorectal surgeons, and so on, so that our patients really do have comprehensive care and can be referred to these doctors as needed. Comprehensive care for patients who were born with any congenital condition that affects multiple organ systems is so imperative, because all of these change throughout the lifespan and they all need to be addressed in a collaborative fashion together.

Melanie Cole, MS (Host): Dr. Hendrick, what are some of the key concerns, issues, challenges in adults with spina bifida as they face transitioning into adult healthcare? What are some of the common medical and even psychosocial complications they face as they transition?

Stephanie Hendrick, MD: So, I think one of the key concerns is that spina bifida can sometimes be referred to as a pediatric condition, and access to comprehensive interdisciplinary care can be challenging. And as Dr. Bowen mentioned as individuals with spina bifida age, their body changes and so with their needs. So for example, individuals may have new mobility device needs or may have to shift how they perform their self-care tasks due to changes in their weight, changes in shape. They may develop complications such as rotator cuff pathology from weightbearing on the shoulders to even like compressive neuropathies in the wrist. There's also psychosocial issues with transition. You know, you're transitioning from a very supportive system. Sometimes it's related to transitioning to college or starting families. So, our role is to really try to fill those gaps in clinical care and meet the needs of these individuals with that comprehensive model of care.

Mara Markzon, LCSW: I just want to piggyback off of what Dr. Hendrick said. As the social worker, I think that this is an area we definitely get involved in. But also, I think navigating the healthcare system as an adult, it's very different than navigating the healthcare system as a child. Because when we're children, the health system itself is different, but also parents are involved and other support staff, other support members of their home are involved. Whereas sometimes in the adult world, we try to, whenever possible, encourage people to take charge of their own healthcare as well.

Melanie Cole, MS (Host): Well, Mara, I'm glad you jumped in there because I'd like you to expand a little bit more on how you facilitate that transition from pediatric care to the Adult Spina Bifida Clinic and then, Dr. Bowen can jump in with her part. But tell us how you actually work with them to make that independence, to show them how they would do this transitioning.

Mara Markzon, LCSW: Well, it starts with meeting these individuals at their appointments at the Lurie Children's building that they're at with Dr. Bowen in the Spina Bifida Clinic there, and then helping transition them from that clinic to our clinic. Trying to do warm handoffs and act as a liaison from the hospital to make sure these individuals have the correct insurance, that they know how to get testing scheduled, how to schedule appointments and get registered with the hospital. So, we try to do it as hands-on as possible.

Diana Bowen, MD: Yeah. One of the biggest identified problems in supply bifida care right now is transitional care and the lack of kind of cohesive programs and the lack of competent adult providers, resources and so on. But the one thing that's been identified as the key to a successful transition time and time again is patient navigation. So, we're trying to build that into our process as best we can. I am a pediatric urologist and an adult urologist. And so, the way we have built the transition process from the children's hospital to the adult hospital is by having actually a transition clinic at the children's side. And so, these are patients who are already in our pediatric spina bifida clinic, and we identified almost over 160 who are over the age of 18 still in our pediatric process who really need to find an adult home and they're starting to have adult care needs. And we've identified these patients and moved them into a separate clinic where we really focus on those social work aspects, navigation, make sure they're stable, of course, in their medical conditions, and give them a two-year period where they can work with on their insurance. Think about appointments, scheduling, all of these adult care items before we actually transition them over to the adult hospital at Northwestern and into our clinic.

Melanie Cole, MS (Host): Dr. Bowen, sticking with you for just a minute. What does a comprehensive urologic care model look like to address the needs of patients with spina bifida? And what treatment strategies or interventions have shown clinical effectiveness? Tell us about some of those latest advances.

Diana Bowen, MD: Sure. So, I mean, I think urologic care means you have knowledgeable adult care providers, who are savvy with what happens in the pediatric world, but also what happens in adulthood with these patients and their bladders and their bowels and just overall, because we focus a lot on quality of life. Treatment advances have been great for this patient population in terms of medicines, injectables, procedures, not just for the bladder, but also for the bowels. Something that we have found particularly effective in our adult spina bifida patients is bladder botox injections. This is a procedure we can easily do in the clinic without anesthesia and provides patients with a significant clinical benefit in terms of their bladder management. Additionally, the use of new medicines such as Myrbetriq, which we didn't traditionally have, has given more options to patients. With the bowels, this is the biggest driver of decreased quality of life for patients and the reason they can't get out and find jobs and enjoy their daily lives. And so, mechanisms like something called Peristeen, which is the ability for patients to administer their own enemas, is a huge quality of life factor for them. So, those have been some of the latest advances in treatments. And I think to have a comprehensive urologic care model, you need to be aware of all of these and be able to offer all of these, which we do.

Melanie Cole, MS (Host): Dr. Hendrick, tell us about the rehabilitative treatment that's often required for these patients. Tell us your role in all of this.

Stephanie Hendrick, MD: So as physiatrists, we really focus on optimizing function. And as you've already heard echoed throughout this podcast already, we want to maximize independence for these individuals. And really what we try to do is not only assess what medical comorbidities may impact their function, but also we work towards preventing medical complications. Complications such as skin breakdown in wounds, constipation, urinary tract infection, bowel and bladder incontinence, overuse injuries. So, we look at the full assessment of mobility and how they perform those tasks of daily living and assess for things like orthotics, like AFOs, that can help perhaps improve their independence and minimize falls with either ambulating or transfers. We partner with our orthotists and therapists over at Shirley Ryan Ability Lab to really assess what kind of mobility devices they have. Maybe they've aged out of it or grown out of it or some individuals maybe transitioning to different living environments and they need power assist. So, that's really our role in identifying what new rehabilitation needs they might have and continuing to follow them long-term.

Melanie Cole, MS (Host): Mara, as we're hearing from the doctors on their roles, and you've already spoken a bit about yours, I'd like you to speak to other providers because you're counseling them. How do you partner with patients and their families in your role as the clinical social worker for the clinic? Because as you're helping them transition to adult care and even possibly live independent lives, tell us how you work with the families and the patients.

Mara Markzon, LCSW: Well, I think that the first thing they teach us in social work school is to meet people where they're at. So for me, really truly having an understanding of what these individuals goals and wishes are, is it wanting to be independent and moving out on their own? Is it getting a job? Is it school? Like in the core, what is it that this individual wants? And then, what resources do we have available in the community that can help reach that goal?

Melanie Cole, MS (Host): Dr. Bowen, I'd like you to speak about research. How will that be incorporated into this clinic?

Diana Bowen, MD: Sure. So, research, as we all know, is vitally important to further improving the quality of life for these patients. And so, we plan to expand on our existing research efforts that have been focused on patient-reported outcomes, how well someone is functioning in the world, what they feel their quality of life is. And having a centralized clinic will really help us to enroll patients in a much more streamlined way to then gather this data that's robust and meaningful to give back to the community with some answers. We give out questionnaires that capture all of these areas and some areas that we really previously haven't looked at, like sexual function and finding out what's most important to the patient that maybe hasn't traditionally been talked about with their doctor.

A couple of areas that we're looking at that will be further enhanced in the clinic is actively studying the role of antibiotic irrigations of the bladder to prevent urinary tract infections. And a big area of concern is kidney function. As our patients age, now that neurosurgical outcomes are so much better, kidney function becomes a huge source of morbidity and mortality. And so, we're just now understanding that traditional measures of kidney function may not actually be accurate in patients with spina bifida. And a new marker, a different marker may give us quite different results that we need to think about in a meaningful way and involve our kidney doctors. So, those are just some of examples of some of the projects that we're looking to expand on in the clinic.

Stephanie Hendrick, MD: I think I'd like to add that in addition to identifying some of just these outcome datas and things that are the most important to patients, but also identifying what barriers they have into access of care or challenges that these individuals experience. So then that way, we can improve outcomes for future patients.

Melanie Cole, MS (Host): I'd like to give you each a chance for a final thought here. Mara, what would you like other providers to take away from this message and tell them what you want them to know from the clinical social worker point of view about the Northwestern Medicine Spina Bifida Clinic.

Mara Markzon, LCSW: I just want to thank my colleagues here for thinking about the whole person and bringing in professionals with so many different backgrounds, so that we can treat these individuals, as a whole person and meet all of the needs, not just one specific need. So, I think that thinking about that going forward when planning other clinics is really important.

Melanie Cole, MS (Host): It certainly is. And what a great sentiment to speak to your colleagues that way. Dr. Hendrick, you next. Tell us what your team's working on to improve some of these health outcomes in spina bifida.

Stephanie Hendrick, MD: So with our team, we're really working on transition and access to care. I think that is the biggest thing that we want to focus on. As I've mentioned before, access to care and especially comprehensive care can be challenging. So, getting some outcome data to allow us to address that is helpful, but also understanding that for rehabilitation, the continuum of care is really lifelong and that bowel and bladder and skin, musculoskeletal system, neurological system, all of these things change as individuals get older unless the rehab needs change. So, sharing that with our colleagues and continuing to help grow the clinic, I think is going to be so beneficial to this population.

Melanie Cole, MS (Host): Well, it certainly is. And Dr. Bowen, last word to you here as we speak about the quality of life for these patients, tell us about some future projects, collaborations, anything you'd like other providers to know as they think about caring for their patients in the medical home and as they transition to adult care, these patients with spina bifida or when referring patients to the clinic at Northwestern Medicine.

Diana Bowen, MD: Yeah. I mean, collaboration is the key to all of this as we're collaborating together, but it also requires collaboration outside of Northwestern with patient's primary medical homes, their doctors. And we are looking to provide that home to kind of answer these more nuanced questions about urologic care, mobility care, rehab care, to help our patients out in the community and help our providers not feel so alone in caring for these patients.

I think there's just so many ways to continue to improve their health outcomes. I'll share just quickly that I had the privilege to attend the World Congress for Spina Bifida just last week that occurs every three years, it was in Arizona. And it was the ultimate collaboration in neurosurgeons, orthopedic surgeons, physiatrists, urologists, patients, patient advocates all there together talking about the most important issues currently for patients and transition of care was listed as the single most important topic on patient's minds. So, I think it just reaffirms what we're trying to do here. And hopefully going forward, we can continue to collaborate with many more specialties.

Melanie Cole, MS (Host): It's such a comprehensive, multidisciplinary approach. And I'd like to thank you all for joining us today and telling us about the Northwestern Medicine Spina Bifida Clinic. To refer your patient or for more information, please head over to our website at breakthroughsforphysicians.nm.org/urology to get connected with one of our providers.

That concludes this episode of Better Edge, a Northwestern Medicine Podcast for physicians. Please always remember to subscribe, rate, and review this podcast and all the other Northwestern Medicine podcasts. I'm Melanie Cole. Thanks so much for joining us today.