Cori Cross, MD (Host): Welcome to Children's of Alabama PedsCast. I'm your host, Dr. Cori Cross. Today, we'll be discussing how to most effectively evaluate the kidneys of patients with spina bifida. We're speaking with Dr. Stacy Tanaka, who's the Chief of Pediatric Urology at the University of

Host: of

Cori Cross, MD (Host): at Birmingham and Children's of Alabama. Dr. Tanaka and her colleagues recently published a study that suggests a new strategy for testing these patients. Dr. Tanaka, thank you for joining us.

Stacy Tanaka, MD: Thank you so much, Dr. Cross. Honored to be here and talk about this study.

Host: Me too. Dr. Tanaka, could you start by giving our listeners a broad understanding of the relationship between spina bifida and kidney health?

Stacy Tanaka, MD: Sure. I've been fortunate to work at the Spina Bifida Clinic at Children's of Alabama and be associated with it. I'm relatively new to Children's of Alabama. But Dr. David Joseph, who has been here for almost 40 years now, has really helped set up the spina bifida clinic here at Children's of Alabama.

Children with spina bifida have multiple problems. They'll have neurosurgical problems, orthopedic problems, but also bladder problems from their spinal cord. And when the bladder's not working the way that it's supposed to, it can put pressure on the kidneys and damage the kidneys over time. And decades ago, as things were improving with neurosurgery, it was very common for people to get through childhood and continue to do well. But then, as young adults, they would die from kidney disease. And so, with improvements in how patients are medically managed, surgically managed, things are improving, but things aren't perfect yet.

Host: This explains why it's so important for spina bifida patients to have regular kidney monitoring. How has the testing typically been done in the past?

Stacy Tanaka, MD: Correct. So, the recommendations really haven't changed. The recommendations have always been to monitor the kidneys by getting an ultrasound, so to be able to look at them directly through ultrasound, and then also getting blood work to measure what the kidney function is through the kidney function directly. So, that's not been a change.

But through the National Spina Bifida Patient Registry that we're a part of, we partner with different spina bifida clinics across the country. And one of our colleagues who's in Chicago, he worked on a study where he was looking at how people were doing kidney surveillance across the country. It was variable from clinic to clinic, but it wasn't being done well, meaning a lot of clinics weren't doing both the kidney ultrasound and the labs.

Now when we looked, most of the places were doing the ultrasound. So that if ultrasound were the only recommended testing, people would be doing great with that. People weren't doing the labs. And so, we've known that as urologists for a long time, but people weren't doing it. And you can kind of imagine why people might not be doing it if you've got a toddler and getting the ultrasound is tough, but it's not horrible. It's non-invasive. But then, when you have to go get that blood draw and you have to get that blood draw every year, or if you say, "Hey, on the way out, why don't you get a blood draw?" you can see how that might kind of fall through the cracks a little bit. And because we were seeing that practice pattern and because there wasn't really anything in the literature to say, "Hey, you can't just do this with an ultrasound," that was where this idea for the study came from.

Host: So, that was the impetus of the study that you published in the Journal of Urology, basically to make it almost like a gold standard to be doing both the ultrasound and the blood work.

Stacy Tanaka, MD: Correct. And although it had already been the gold standard, it wasn't really what people were doing. And so, really, just to hammer home that point, "This is the problem if you're just doing the ultrasound alone."

Host: And was it universal what blood work was needed or was that also fluctuating from clinic to clinic?

Stacy Tanaka, MD: There was some fluctuation. But really, sort of the easiest, most standard one, that's what they were looking at to see if they were getting any blood work at all.

Host: And then, what about how frequently you monitor? Did that change or was that updated at all?

Stacy Tanaka, MD: So, it's yearly, to go ahead and check that yearly. There wasn't any change for that. But really, just to say, "Hey, our practice is not what it needs to be and this is why."

Host: Now, obviously, I would assume that you've implemented these findings at Children's.

Stacy Tanaka, MD: I feel like Children's has been one of the sites that has been doing this well for a long time. The Spina Bifida Clinic at Children's with Dr. David Joseph in Urology with Dr. Jeff Blount in Neurosurgery, Dr. Drew Davis in PM&R, the multiple people who come to Spina Bifida clinic for years, they've made our spina bifida clinic really one of the top spina bifida clinics in the country that's nationally recognized. I mean, before I came to Children's of Alabama, when I was setting up a program, I came to Children's of Alabama to see how to do it right. So, it wasn't trying to address a problem here. It was really just working with other clinics to say, "How do we improve this everywhere?"

Host: Now, I would assume that once you've started to implement doing blood work and an ultrasound at every yearly checkup for these patients, that you develop a protocol that makes it less cumbersome to be doing the blood work. Yes, it's difficult to do a blood work on a two-year-old or a three-year-old or a four-year-old. But once you've started it as a standard practice, your clinic sort of figures out a way to make it so that it's not so difficult. Would that be true?

Stacy Tanaka, MD: I think that's absolutely true. I think that the places that have more patients, it's easier to have a protocol, because you have to have a protocol in order to function. But I think it's harder maybe for some of the places who don't have as many patients who aren't seeing as many children, that it's not as common the diagnosis to maybe to not remember to do it one time or remember to do it one time, but not the other.

Host: Now, those that haven't read the journal article, I'm assuming you addressed how doing this changes the health of the kidneys and the viability of the kidneys long term. Just give us a little background on that. What do you see as really the benefits of this? How does it affect patient's longevity and their kidney function?

Stacy Tanaka, MD: I think that there are still a lot of unknowns about long-term kidney outcomes. But one of the things that we do know and that we showed in the study was that you can have an ultrasound. The easiest thing to see on the ultrasound is to see if urine's backing up on the kidney. It's not subtle. It's something very easy to read. And you can have no urine backing up on the kidney, but when you measure what the renal function is based on the blood values, you could see that there's already been some kidney deterioration going on.

So, the problem about just relying on the ultrasound is that you have children who their kidneys are already starting to fail, but they don't have the right intervention at the right time for that because, unless you're measuring it, you're not going to know.

Host: I mean, that makes complete sense. It's great that you guys were able to publish the study to really drive home the importance of getting the blood work and the ultrasound. Is there anything else you'd like to share with our listeners before we wrap up?

Stacy Tanaka, MD: The only thing that I'd like to add is that I think working with our spina bifida clinic, works closely with the Spina Bifida Association, works closely with spina bifida clinics across the country, collaborates with providers who take care of individuals with spina bifida internationally, because it's not a rare diagnosis, but it's not an everyday diagnosis. And I think it's through those collaborations where we're all learning from each other, and then that's how we're going to advance.

Host: Thank you so much for taking the time to speak with us. This has been a very informative discussion both for me and, I'm sure, for our listeners.

Stacy Tanaka, MD: Well, thank you so much. Thank you for letting me share this information with everyone.

Host: Of course. If you would like more information about the Spina Bifida Program at Children's of Alabama or to refer patients, please visit insidepeds.org and search spina bifida. That concludes this episode of Children's of Alabama PedsCast. If you found this podcast helpful, please share it on your social channels and be sure to check out the entire podcast library for other topics that might be of interest to you. Please remember to subscribe, rate, and review this podcast. Thank you for listening to this episode of Children's of Alabama PedsCast. I'm your host, Dr. Cori Cross.