Juvenile Arthritis – PediaCast 311

Show Notes

Dr Charles Spencer joins Dr Mike in the PediaCast Studio to talk about Juvenile Idiopathic Arthritis (JIA). Learn the ins and outs of this tricky disease, including common presentations, diagnosis, treatment and long-term outlook for affected kids. We also cover the latest research topics!

Juvenile Idiopathic Arthritis (JIA)
Juvenile Rheumatoid Arthritis (JRA)

Dr Charles Spencer
Chief of Pediatric Rheumatology
Nationwide Children’s Hospital

Contact Dr Mike – Show Questions, Comments, Topic Ideas
Nationwide Children’s – Request an Appointment or Referral
Nationwide Children’s – Non-Urgent Medical Questions


Announcer 1: This is PediaCast.


Announcer 2: Welcome to PediaCast, a pediatric podcast for parents. And now, direct from the campus of Nationwide Children's. Here is your host, Dr. Mike.

Dr. Mike Patrick: Hello, everyone. Welcome once again to PediaCast. It's a pediatric podcast for moms and dads.

This is Dr. Mike, coming to you from the campus of Nationwide Children's Hospital. We're in Columbus, Ohio. It is Episode 311 for March 18th, 2015. We're calling this one "Juvenile Idiopathic Arthritis". I want to welcome everyone to the show.

We have another nuts and bolts program lined up for you this week, and out topic at hand is Juvenile Idiopathic Arthritis, also known as JIA — formerly known as Juvenile Rheumatoid Arthritis or JRA. You might have heard it called that. We'll cover the ins and outs, including the reason for the name change.

It's not often we change the name of something in medicine, so you know it's important when we do, and we'll fill you in on the reason. That's coming up.

So you may or you may not have heard of juvenile idiopathic arthritis. It's not as common as many of the disorders we cover on this program, but it's an important disease to cover because any disease that affects kids is important to cover. This one can be a bit of a tricky diagnosis, so providers and parents alike, it's one of those things that you want to know about and maybe just store in the back of your brains. So if and when you do come across a child with these particular symptoms, you think about it.

Of course, if you know any families dealing with a juvenile idiopathic arthritis, whether it be family members or friends of the family or for the providers in the crowd, maybe you have patients with the JIA in your practice, be sure to point them in the direction of this episode, PediaCast 311, so they can learn more about the disease including the cause, symptoms, diagnosis, treatment, long-term outlook and the latest research topics.


As I said, it's another nuts and bolts edition of the show, and in our usual fashion, I do have a great studio guest to help me cover the topic — Dr. Charles Spencer. He is Chief of Pediatric Rheumatology at Nationwide Children's Hospital. We'll get him settled in to the studio in a moment.

But first, this is a great time to remind you, if you like our interview editions of the program, especially when we take a disease and dissect it from several angles, then you'll love our upcoming project, PediaCast CME.

It's a brand-new pediatric podcast from Nationwide Children's Hospital. I have the honor of serving as host, and we plan to turn up the science and offer free Category 1 CME credit for physicians. So we hope to launch later this month, maybe early April, but not much later than that. You can find all the details at PediaCastCME.org.

Also, I want to remind you about our 700 Children's blog. That's where we call upon the collective pediatric expertise of our entire institution and present a fantastic collection of articles for moms and dad written in a way you can understand and find useful. It's 700Childrens.org.

Some recent topics, RSV and bronchiolitis — yeah, we're still seeing a little of that making its way around  — common misconceptions of life after pediatric heart surgery, couple of articles on vaccines, one from the perspective of a physician who's old enough to remember life with polio and measles — he has some wise words — and another from one of the nurses that I worked with in our urgent care system. She has a sister who had encephalitis from a vaccine-preventable disease, and she shares her family story. It's quite compelling.

Then, diagnosing food allergies with component testing. It's a topic that affects lots of families in the United States. How about that new peanut allergy study? You've probably heard about in the news. We weighed in on that as well.


Be sure to check out these articles and more. Again, you can find them at 700Childrens.org.

Also, I want to remind you, it's easy to get in touch with me. If you have a comment or a question or want to point me in the direction of a news article, just head over to PediaCast.org and click on the Contact link.

And actually, this is exciting news. Our voice line is back up and running, so if you want to call in and leave a message that way, the phone number is 347-404-KIDS. 347-404-5437, and you can leave a message for me that way as well.

Also, I want to remind you the information presented in PediaCast is for general educational purposes only. We do not diagnose medical conditions or formulate treatment plans for specific individuals. So, if you do have a concern about your child's health, be sure to call your doctor and arrange a face-to-face interview and hands-on physical examination.

Also, your use of this audio program is subject to the PediaCast terms of use agreement which you can find at PediaCast.org.

All right, let's take a quick break. We'll get Dr. Spencer settled into the studio and come back and talk about juvenile idiopathic arthritis. That's coming up right after this.


All right, we are back. Dr. Charles Spencer is Chief of Pediatric Rheumatology at Nationwide Children's Hospital, and a professor of clinical pediatrics at the Ohio State University-College of Medicine. He is founding editor and current co-editor of the peer review journal, Pediatric Rheumatology, and he is a recipient of the American College of Rheumatology Clinician Scholar Educator Award.


Dr. Spencer has a passion for educating young patients and their families on the ins and outs of rheumatologic disease, and that's why he stopped by the studio today to talk about juvenile idiopathic arthritis.

So let's extend a warm PediaCast welcome to Dr. Charles Spencer. Thanks for stopping by.

Dr. Charles Spencer: Thank you, Mike. Good morning, everybody.

Dr. Mike Patrick: I really appreciate it. So you come in a kind of Sherlock Holmes garb this morning. What's going on with that?

Dr. Charles Spencer: Well, I think it's a good way to express the role that pediatric rheumatologist have in the medical community and for patients and families. We often see children with unusual problems who need a diagnostic approach that requires a lot of awareness of many different problems or cause, systemic illnesses with problems such as fever, rash, joint problems, bone problems, a lot of different things.

Dr. Mike Patrick: So when it's hard to put the pieces together, pediatric rheumatologist would be a good helping hand.

Dr. Charles Spencer: That frequently happens. We call ourselves rheumatology and obscurology.


Dr. Mike Patrick: So it's kind of like the Dr. House of the hospital, correct?

Dr. Charles Spencer: Yeah, nicer though.

Dr. Mike Patrick: Yes.


Dr. Mike Patrick: Absolutely.

So let's talk about juvenile idiopathic arthritis. If you could put it in a nutshell, what's the basic definition of that?

Dr. Charles Spencer: It's chronic arthritis in children, basically. The current terminology is an inclusive lumpier type of terminology that includes generally all causes of chronic arthritis on a day-to-day basis in kids.


Dr. Mike Patrick: Gotcha. And we think, is there an autoimmune component to this disease?

Dr. Charles Spencer: Oh, yes, it's definitely autoimmune, as opposed to infectious or malignant or mechanical/trauma type of causes of musculoskeletal  problems.

Dr. Mike Patrick: So, it's really your immune system attacking your body.

Dr. Charles Spencer: Right. A mistake occurs at some point in a genetically predisposed person or child till something happens as it were, and an autoimmune problem starts out of the blue, with no warning frequently.

Dr. Mike Patrick: We talked in the introduction that this was formerly called juvenile rheumatoid arthritis or JRA, and I know when I was training that's what it was called. I take it that it's the same disease, just the name change?

Dr. Charles Spencer: Well it's a different cause of occasion which means that the arthritis diseases are labeled a little differently. So it's all about labeling. Like you might label food, cans of food on our shelf. We have a different way of labeling now.

In the olden days, it was mainly a British, an American type of terminology, rheumatoid. When we went international in the 1990s, getting together, it was brought up that the rheumatoid is really thought to be more of an adult rheumatology term, or an adult arthritis term that relies on the rheumatoid factor test, and most children don't have the rheumatoid factor test positive, so that it was felt that to take that rheumatoid out of it as being misleading.

Dr. Mike Patrick: So we had to change our terminology so that we could talk with the international crowd, so to speak.


Dr. Charles Spencer: Well, that's how it was. When we went international, people brought up a lot of different term type issues. So that happens because we don't have an exact cause of a lot of these diseases, so we have our terms that are made up clinically by how patient look and appear when they come in to a doctor's office.

Dr. Mike Patrick: Now, I've also mentioned in the intro that it's not crazy common disease, which probably makes it a little bit more difficult to diagnose. Or maybe it is more common than we think, and it goes more misdiagnosed frequently. How common is it?

Dr. Charles Spencer: Well, it's certainly not rare, one of my least favorite words about it. It's unusual, but it's like the sixth most common chronic disease in childhood. It's nothing like asthma or even diabetes or malignancies, but it isn't unusual either. There are 300, 000 children in the US, approximately, who have this family of illnesses on a chronic basis that includes arthritis every day.

Dr. Mike Patrick: Do you see a difference between boys and girls?

Dr. Charles Spencer: Girls have it more commonly, overall. Sometimes, it's much as a ratio of three to one. But it varies with the type of arthritis.

Dr. Mike Patrick: What about different ethnic groups? Is it pretty much equal or there's certain ethnic groups where you see it more?

Dr. Charles Spencer: It's pretty much equal in all ethnic groups, at least, the chronic arthritis form of illness.

Dr. Mike Patrick: Do you see it running in families? Is there something that if there's a family history of JIA, then you may want to think about it a little more.


Dr. Charles Spencer: It's more of a cluster of autoimmune problems than it is a single disease, with exception — psoriasis which runs very strongly in families — but it's not uncommon to have an aunt with Diabetes Type 1, and a cousin with another autoimmune problem like thyroid, and then a child comes in with a possible autoimmune problems.

So there's a whole host of like hundreds of autoimmune genes, several hundred. We inherit them in different ways, so that we may have an autoimmune problem of some sort being more common in our family, but not necessarily of pure inheritance of juvenile idiopathic arthritis.

Dr. Mike Patrick: We talked about the autoimmune mechanism and you said something happens that starts that process, and we don't always understand what that something is. What are some of the possibilities?

Dr. Charles Spencer: Well, let's put it in context. I was looking in a Time magazine with a picture of a child who the title  page said he might live to a 142. So I like to think of things over a lifetime, and if you live a long time like that article suggest, things happen. Our bodies are not perfect and you're likely to get an autoimmune disease in your lifetime of some sort. Just like you're likely to get cancer at some point, even though if might be just a little skin cancer plus you might get other chronic problems because we're fallible human beings where things happen.

So with an autoimmune problem you have a genetic tendency with certain genes being there, and then you have to have some trigger that sets it off, and then a couple of other factors — probably your immune system maybe a little out of whack, and then it sort of crystallizes like a snowflake where suddenly it's there, and it wasn't there before and then it goes on. And your body adapts, but you have a health problem there because your whole system has changed.


Dr. Mike Patrick: So, really, it's kind of that combination of genetics and environment and just chance, and luck and unluck, kind of all mixed together.

Dr. Charles Spencer: Right. No one's fault. We don't know how we can prevent it right now, because there are Nobel Prizes out there waiting for someone to come up with how exactly all these autoimmune problems start, like Type 1 Diabetes.

Dr. Mike Patrick: Yeah, absolutely.

Dr. Charles Spencer: But we don't have that yet. If we don't get too much war and pandemics and other things draining resources in the next 50 years or even sooner, there'll be a lot more known about why we get autoimmune problem.

Dr. Mike Patrick: So we determine that it is an autoimmune problem. The person's immune system attacking various parts of their own body. We don't really know what initiates it for sure. But we do know some of the resulting signs and symptoms of the process. What do you see clinically when a kid has JIA?

Dr. Charles Spencer: Well, it can happen abruptly but often starts slower with mild musculoskeletal complaints. It can be a little bit of pain at times. Children frequently have musculoskeletal pain of a benign type, whether you want to call it growing pains or whatever. Then it becomes more significant where they might be a functional change, where a child limps or a child has trouble after playing soccer or other things that show up in a child's life.


Frequently, at first, it's thought to be benign and the parents are not concerned. But then, as it gets worst and the child really has functional problems. Or different signs show up like morning stiffness, where a child really can't get out of bed very easily or swelling or joint swells, if a child has trouble at school for the first time, can't write very well or use their fingers. So things accumulate where the joint growing pain explanation starts to not hold water any longer.

But you may go to a physician or a nurse practitioner, and that's what you get back, is that this is probably benign, and most of the time it is. It's only the child who keeps having problems day after day, week after week, who is going to likely develop a chronic arthritis illness.

Dr. Mike Patrick: Now, aside from the joints, do you see other problems associated with JIA outside of the joints?

Dr. Charles Spencer: Sure. It can be a systemic illness. It depends on the category of juvenile idiopathic arthritis. There's one called systemic, which is probably not autoimmune as much as auto-inflammatory, which means it has a lot of genetic components of inflammation to it.

So when that happens, the children gets fevers and rashes and they can be quite ill at times. They often get admitted at the hospital after 10 days of fever, rule out infection, rule out cancer malignancy. But they keep having fevers, they're quite sick day after day and their blood counts are quite abnormal,  and everybody is really in a crisis with that type of systemic onset juvenile arthritis.


But that's not the usual presentation. Most of the time, it's more musculoskeleletal with polyarticular with just four joints or more or oligo which is four joints or less. Actually, it's five joints or more, four joints or less — lest there is pediatric rheumatologist listening.

Dr. Mike Patrick: Yeah.


Dr. Charles Spencer: It's the polyarticular versus the oligoarticular. So those are kids who just present with joint troubles. All these kids can have some loss of weight. They can certainly have fatigue. Some of them get depressed a little bit because they hurt. They're not happy campers. They can't do what they usually do. Their parents are flummoxed. They don't really know what's going on.

Dr. Mike Patrick: Yeah, kind of at their wits end.

Dr. Charles Spencer: Frequently.

Dr. Mike Patrick: And kind of make their way sometimes too from provider to provider because they feel like they're not being listened to, or no one can figure this out, and so you get exasperated and had to see someone else.

Dr. Charles Spencer: Well, what are we taught in medical school? We're taught common things occur commonly. When you hear hoof beats, think of horses, not zebras. So for every physician that sees this child, they start over and think of it as a common problem and only after awhile does someone start to think that maybe it's an unusual problem such as juvenile idiopathic arthritis.

Dr. Mike Patrick: Yup. Now, you talk about growing pains and also sprains and strains, and other explanations for joint pain, but then this continues on. Are there other diseases that could cause similar signs and symptoms that you have to think about?

Dr. Charles Spencer: Oh, there's a whole group of them. And a lot of the talks we give to medical students and to residents and to the community physicians are about that evaluation of a child who comes in with a musculoskeletal problem.

We have a big overlap here, with sports medicine doctors and orthopedist. We all live in the same territory, and we all see kids with similar complaints. Some of them though have just mechanical problems where they've injured something, whether they have pulled a tendon or have a small fracture or developing more of a chronic orthopedic problem like a vascular crisis or like Perthes, or perhaps a Slipped Capital Femoral Epiphysis. Or they have a ostheocongitis.


There's a lot of different things that can cause musculoskeletal pain, and rheumatology is far and away not the most common explanation for those things. Juvenile arthritis has to be there for at least six weeks, day in, day out, before you should really consider the diagnosis pretty definite. Before that, most of the things go away, because they're self-limited or they're diagnosed and treated by a sports medicine or orthopedic doctor as something that is mechanical and did the way God made your body, and things that had happened to it.

Dr. Mike Patrick: Yeah, absolutely. So then, if you have a kid who, let's say they have had symptoms that are prolonged and no one seems to be figuring out what it is that's going on, how do you go about diagnosing JIA? Is it just based clinically? Or are there some tests that you do to check for this?

Dr. Charles Spencer: Tests are lousy, generally. Physical examination is where we get a hint of it by the history. We're asking about swelling and loss of motion and loss of function, morning stiffness. We're picking up some little positives on the history.

But then we launched into the physical exam, which is really the most important thing, looking mainly for swelling of joints or if the joints don't move well, or if they're tender, or if they're painful on range. The swelling is the most important one. If you have swelling of the joint, this is abnormal, something's going on. Whereas tendonitis and pain are a little bit more subjective.


Limitation, if it's been there awhile, can be misleading. You're looking for limitation that's new and that is a reflection of the possible inflammation in the joints. So the physical examination is for rheumatologist, the most important thing.

Dr. Mike Patrick: Gotcha. When would you think about  verifying it with blood work or checking X-rays?

Dr. Charles Spencer: Well, the earliest it is, the more important it is. In other words, if it's been going on for only a few days, you have to think about other things. First of all, fractures and everything, so that's when X-rays can be very important right at first. You may have to worry about infection in the joint, staph, germ in a joint where you might have to be more vigorous and looking for infection by getting fluid from the joint and that type of thing.

So, the earlier you are, the more you have to look for the common causes. The longer it's been going on, then you have to consider getting some blood test to look for other causes of arthritis outbreak in a child or arthritis problems. So if the kid's not walking, then you're going to start doing more aggressive blood test.

Dr. Mike Patrick: Now, we do have pediatricians and family practice doctors and nurse practitioners in the audience here. What sort of blood test would be useful?


Dr. Charles Spencer: Well, you start out with a very basic level of blood test. Getting a CBC, a complete blood cell count with your white cell count and your hemoglobin and your platelet count and your differential looking for signs of inflammation  — whether you have anemia that might suggest that something systemic is going on, that leads to the low hemoglobin or hematocrit. If you have a white cell count that's very high, suggesting lots of inflammation, or low, suggesting some immunosuppression.

You can have a platelet count also that can reflect inflammation, or if it's very low and reflect malignancy. Your differential, if you have a shift to the left, then you're with more neutrophils. You can certainly be concerned about infection or inflammation or shift to the right and you're worried about leukemia.

The CBC, primitive though it is, is a good place to start. Now, rheumatologists love sed rates and we carry along CRPs along that way, because the sedimentation rate — though as I've been told, very primitive test — who do you worry about in the emergency room, a child with a very high sed rate or a child with a normal sed rate? Of course, you worry about the one who has lots of inflammation by the sedimentation rate because their risk is higher.

So you do get CRP also for infection that can make you be concern that you're missing an infection or the child has a viral or a type of infection that enflames the joints or the muscles.

So CBC, sed rate, CRP — your analysis always because if the kid has protein or blood, you got a systemic illness going on, assuming the child isn't having her period, a teenager not having her period. Other things — X-ray of an infected joint. Never had X-ray of a swollen knee, you need to get an X-ray. Mainly, you're looking for osteomyelitis, a cold fracture, an invasive lesion of a malignancy, things like that.


That's the basic lab that you start with, and you try not to shotgun and do a lot of serologies. You use your history to tell you whether you need to do serologies. A child has a recent strep infection, then you'd get your Antistreptolysin O and your Anti-DNase B as well as a rapid strep to check for that. If a child has muscle weakness as well on physical exam, you might think of a muscle inflammatory disease, myositis or a viral-induced myositis.

Child comes in with a mylar rash, must be lupus. You're going send off your ANA and Crithidia anti-DNA, anti-double-stranded DNA or similar DNA tests, C3, C4, and you're going to maybe go in for other anti-nuclear, anti-body profile type of testing.

A lot of it has to do with the history that will lead you to order more serologies. You have to remember serologies are extremely expensive. Some people have 20% co-pays on their insurance, so we try not just to shotgun them and have them finally end up paying $400 out of their pocket because you spent $2,000 in your laboratory tests, which is quite possible these days.

Dr. Mike Patrick: Yeah, absolutely. So, once you've done these things — well, as many as you need to do, not that you have to do all of those — but you have a pretty good idea that it is juvenile idiopathic arthritis, based on history and physical and all of these, how do you go about treating that then? What's your management approach for JIA?


Dr. Charles Spencer: Well, it's basically an inflammatory process, so you have to use medications. Unfortunately, we have no surgeries that will just take this problem out and eliminate it. There isn't a Harry Potter magic wand to take away this in most instances and that's what everyone would like. It is a chronic problem and has a good prognosis mostly, but you do have to treat it because there are consequences. Arthritis left untreated, inflammatory arthritis in kids or adults does damage tissue, cartilage, bone and other effects can recur when there's damage in those areas.

So you certainly have to use medication. Parents sometimes have some concern about using medication in a young child on a chronic basis. But from our perspective, we have medications now that will in some cases take away these arthritis, if not permanently, but at least get it into remission. We start with anti-inflammatory such as naproxen and ibuprofen, non-steroidals anti-inflammatory drugs and there are some others in that category. But we have even much bigger guns if a child has major arthritis.

Dr. Mike Patrick: I do a little research before the shows, and one of the things I kept coming across was 'biologics'. What are biologics in the treatment of JIA?

Dr. Charles Spencer: Well, let's go back over the last 50 to 100 years. Aspirin was the first medicine we used. It was actually in the Versailles treaty, where Germany had to let go of their patent on Bayer aspirin. So we used non-steroidals up until the 60s as one of our mainstays and used cortical steroids. And then, we have gold shots, heaven forbid, that were very toxic. But  methotrexate was the first really good medication which is really a cancer medicine used in small amounts for arthritis.


But the first medicine we had that was specifically designed to help arthritis were these biological therapies that started with molecular biology into the 1960s into 70s. We've heard about these drugs for years, and finally in 1998, they came with the introduction of etanercept or Enbrel for kids and adults with arthritis.

These had been magical medicines for some kids. Not everybody gets better on them, but they have changed our prognosis with arthritis in a way that's hard to really transmit in a radio show at all. You've had to see pictures of meetings of kids and families with arthritis from the 1970s where the kids, a lot of them that came were in wheelchairs to now where no one is in wheelchairs. And the biologics are primarily responsible for that.

Dr. Mike Patrick: And they're called biologics because they're naturally occurring proteins but they're genetically engineered?

Dr. Charles Spencer: That's right. These are medications against some of the proteins in our body that are part of the inflammatory process or whole mechanism that injures tissue and causes pain and inflammation, and redness, swelling, and all these other causes, things that are associated with arthritis.


So these, there's the TNF-alpha protein, which is Tumor necrosis factor-alpha which has a lot of biological actions in the body, but one of them is to be involved with inflammation of arthritis. Several of our medicines such etanercept or adalimumab — these biologics all have difficult names — swallow up the TNF-alpha by using anti-TNF molecules. They either get them in the body, in the blood or in the tissue, or they do that plus they bind on the cell membranes.

They really would do this negative effect of those inflammatory proteins called cytokines. And so, it specifically goes after those molecules. They can be side effects you have to watch for because it makes it easier to catch certain infections when you're on those drugs. If anything, you have to worry about risk benefit, and we do there, but the benefit for some kids has been so amazing that most of us lose no sleep over worrying about possible side effects.

Dr. Mike Patrick: Now, in addition to medications, I suspect that you also utilize just normal things that you would do when joints are hurting like physical therapy, exercise programs, heat, cold, those kind of things.

Dr. Charles Spencer: Yeah, correct. There certainly are a lot of things outside of medications to use — physical therapy, occupational therapy, working with kids, exercise program of different sorts outside of that. Doing things at home, there's a lot of different medications and creams and things that can be used for pain and for increasing function. There's multiple things that people can talk about, read about in different books and in online that will help the kid cope day to day.


But we give the kids a real list, and the families, a list of things that have to be done. Medications are just part of it. Physical therapy and there's eye checkups, and there's adjustment for school. There's notes to the dear gym teacher. Nothing against gym teachers, but make sure that they don't have to run around the gym with a swollen knee with everybody else if they're really hurting. There's a number of  adjustments to make.

Dr. Mike Patrick: You talked about eye exams. So the eye too is one of the areas of the body that can have inflammation with JIA.

Dr. Charles Spencer: Yes, it's rather odd. It's just one part of the tissue that has similar proteins to what's in the joint so that a child who has a joint problem can have a chronic eye problem that can lead to blindness if not picked up early. So we have to have these children regularly see the eye doctors and get what's called a slit-lamp exam, where you look in the front part of the eye for inflammation of what's called a uveitis. That's associated with some children who have juvenile arthritis, particularly young girls who have several joints or multiple joints affected and who also have the positive ANA, anti-nuclear antibody test.

Dr. Mike Patrick: Now, what is the long-term outlook for kids with JIA? Is this something that they really has to be treated and their living with it their entire life, or is this something that gets better with time? Was there a variable?

Dr. Charles Spencer: Well, there's good news, and there's bad news. The good news is that we have great drugs and a lot of kids can be put into remission early.


The whole idea is to diagnose it early and treat it early. That you have a window of opportunity to get this disease under control and into clinical remission early if you start treatment in the first few months. The difficulties are if the disease will hold on a child and gets into them, without good treatment, disease can go on for months and years and go into adulthood.

We have to be honest and say even with the best treatments, they are a subset, a small number of kids who despite the best biologics and the best treatments, will go on to adulthood with an ongoing arthritis. It may be as many as 50% sometimes of our kids, though controlled, aren't in remission, and they go on into adulthood still needing medication and being seen by adult rheumatologist at that point.

So it's sort of a shift. We have eliminated the middle-range kids and getting them all into remission. We do have some kids that used to be middle-range who are now quiescent and have no disease going into adulthood. But we have eliminated pretty much the kids who had horrible disease and are in wheelchairs and that type of thing and permanently disabled and have a life that is nowhere near normal.

There are caveats to that. The kids with the families, and I don't want to be overly-judgmental, but parents who won't allow the treatments to be used at all, those kids can go on to have a serious disease as the ones we use to see in the past. We do see some families where, for them the  treatment is always the worst thing than the disease.

Dr. Mike Patrick: Yeah, gotcha. What are some hot topics right now in researching juvenile idiopathic arthritis?


Dr. Charles Spencer: Well, the major thing we're trying to do is to improve outcomes by all ganging together as pediatric rheumatologists. I had that problem, in cocktail parties, people say, "What do you do?" And I say, "Uh, I take care of kids with arthritis." I've done that after I tried to get by just saying, "I'm a pediatrician." My wife steps on my toe, and I say, "OK, I take care of kids with arthritis." And they say, "Oh, that's so sad." And I'm so used to it, that's not something I feel. It's something that's my passion in life, is to help these kids.

So it is something though that I can feel good about because we can do so much more with these kids now, but we really have to deal with the education part. The public doesn't know about kids' arthritis, and we're always swimming upstream with that. I used to think I'd put a sign on the bus that say "Kids have arthritis," but I realized that people would see that and think that somebody was crazy. They wouldn't believe.

Education is our big thing — getting families and the public to know about juvenile arthritis. Then, we can get early diagnosis. We can get the medical students to know more about it, and the residents. So when they get out, when they see it, they'll know it, and then they can get us into the center.

So then, we can get better outcomes. We're organizing in the US and in Europe and working together on outcome type of programs that are clinical treatment protocols that optimize the best type of treatments, so that we'll be more and more getting better outcomes just as the oncologists have improved the outcome for leukemia over the past 50 years, by banding together.


We have our organization called Children's Arthritis and Rheumatology Research Alliance, and they have one in Europe called Printo. It's Paediatric Rheumatology INternational Trials Organisation. We're all trying to work together internationally to improve outcome.

Dr. Mike Patrick: Great. Tell us a little bit about the rheumatology program here at Nationwide Children's Hospital.

Dr. Charles Spencer: Well, we're an enlarging group. We're up to eight physicians as of July and we'll be one more the following year, have nine. We've been building to respond to the need in the Central Ohio area. We're one of the ten largest groups in the country. But this is part of a growths around the country. We're up to about 300 of us around the country and we started with about 35 in 1976.  So it's been a really large contingent that we're building here.

We're doing research, clinical-based research at this point, with this Children's Arthritis and Rheumatology Research Alliance. We're also working hard on the educational side to try to build a program at our hospital and for the region that will make physicians and other care providers better at recognizing these musculoskeletal problems, and also helping us send the patients that need to go to sports medicine there, the ones to orthopedists there and to rheumatologists for better outcome by quicker diagnosis.


Dr. Mike Patrick: That's great. Of course, being here at the hospital, you have access to all the resources that the hospital has. Some of these kids may need to see psychology. Social workers may be involved, and of course, as we talk physical and occupational therapy. And so being at the center like Nationwide Children's, you really have access to everything.

Dr. Charles Spencer: It's true. It really helps to have a healthy and vibrant pediatric community around us. We have tremendous resources. That's what we need for all kids with arthritis around the country. We're lucky, this society has so far the resources to help us provide services that we have at Nationwide Children's.

And we need social workers. We have kids that are in situations that are stressed. They can help at a tremendous amount. Psychologists help us with our kids who are having trouble adapting to a teenage life with a chronic illness, similar to having asthma or diabetes or malignancy. These kids are certainly in need of sometimes help just dealing with life. Teenage years are hard enough at times without having a chronic illness. And we have the physical and occupational therapy and other services that really help us provide excellent care.

This is a long-term problem though, and our section is building and we're working with other centers. We have a quality improvement program, which is sort of 'in' in the 2000s. The 21st-century type of way to improve care is to look at your care critically and to see what you can get better, that no care did you provide is without a chance to be improved upon. You can get things better.


One of our challenges is getting kids to the eye doctor, to be looked at. Not only getting them there, getting a report back from the eye doctor, reading it, filing it into our computer. That's one of our quality improvement projects that we have to try to get over 90%. We don't want a kid to drop off the map where they're not getting eye check-ups, and then lo and behold, they get an eye checkup and they have eye disease that's caused damage to their eye. So those are the type of things using our network we're trying to improve upon.

Dr. Mike Patrick: Great. We really appreciate you stopping by and talking to us today.

We will have some links for folks in the Show Notes over at PediaCast.org and this is Episode 311. Let's make it easy to find. We have a link to the Pediatric Rheumatology Program here at Nationwide Children's Hospital.

Also, there's a great educational resource with the NIH. They have a juvenile idiopathic arthritis page. And the Arthritis Foundation also has a lot of educational materials and support resources at their site as well. We'll put links to all of these for in the Show Notes for folks so you can find.

Of course, we also have a link to the Nationwide Children's online referral and appointment center so you can connect easily whether you're a patient or a primary care provider. If you want to connect with the pediatric rheumatologists here at Nationwide Children's, you can follow that link. Again, that will be in the Show Notes.

All right, well, once again, thank you so much for stopping by.

Dr. Charles Spencer: You're welcome, Mike.

Dr. Mike Patrick: Let's take a quick break and I will be back to wrap up the show, right after this.



Dr. Mike Patrick: All right, we are back. Just enough time to say goodbye. I want to thank all of you for taking time out of your day to make PediaCast a part of it. Really appreciate it.

Also, thanks again to Dr. Charles Spencer, chief of Pediatric Rheumatology at Nationwide Children's Hospital. Don't forget if you're in the Central Ohio area, Nationwide Children's offers urgent care services at seven convenient locations, including our downtown main campus, Dublin, Hilliard, Marysville, Westerville, East Broad, and Canal Winchester.

You can find exact locations, hours, and approximate wait times on our website, Nationwide Childrens.org/urgentcare. You can also find urgent care information in our mobile app called MyChildren's. That's available for iPhone and Android.

Of course, you should always check with your regular doctor before going to any urgent care, just to make sure it's the right thing to do given your child's problem and situation. And if your child has a serious or life-threatening problem, head to your nearest emergency department or call 911.

That's all the time we have today. PediaCast is a production of Nationwide Children's Hospital. Podcast are available in iTunes, under the Kids and Family Section of their directory and reviews there are always welcome and helpful.

We're also on iHeart Radio, simply search for PediaCast. You'll also find PediaBytes, B-Y-T-E-S, on iHeart Radio. These are shorter clips from the show but easier to take in if you only have a few minutes. We're in most podcasting apps for iPhone and Android including the Apple podcast app, Downcast, iCatcher, Pod Bay, Stitcher and TuneIn.

Of course, there's the landing site, PediaCast.org, where you will find an archive of more than 300 episodes, our Show Notes, written transcripts of each program, our terms of use, and an easy Contact Page to ask your question and suggest your topics.

You can also call our voice line and leave a message that way. Again, the number is 347-404-KIDS, 347-404-5437.

And then there's social media, PediaCast is on Facebook. Be sure to follow us there for breaking pediatric news and commentary, plus it's a cool community of moms and dads supporting one another. We're also on Google Plus, Twitter and Pinterest, less of a community feel on those spaces, but if you're there, follow and share to keep up-to-date with the latest show topics.


Of course, there's good old fashion face-to-face media. We always appreciate talking us up with your family, friends, neighbors and co-workers, anyone with kids or anyone who takes care of children. Finally, please tell your child's doctor about the program next time you're in for a check-up, say "Hey, doc, there's a great evidence-based pediatric podcast for parents called PediaCast. You should share it with your families," and to help you do that, there are posters available under the resources tab at PediaCast.org.

While you're at it, let your providers know we have a podcast coming up for them too — PediaCast CME. Similar to this program but we turn up the science a notch or two and provide free  Category 1 CME credit for listening. So that's coming soon. Shows and details will be available at PediaCastCME.org.

That's a wrap for this one.  Until next time, this is Dr. Mike, saying stay safe, stay healthy, and stay involved with your kids. So long everybody.


Announcer 2: This program is a production of Nationwide Children's. Thanks for listening. We'll see you next time on PediaCast.

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