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Interviewer: Children with autism are more likely to end up in the hospital unnecessarily than children without autism. We'll examine a research study that gives parents and physicians some valuable information and lessons about this topic next on The Scope.

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Interviewer: Dr. Paul Carbone is an associate professor of pediatrics that specializes in autism and related developmental disabilities. You were involved in a recent study called Ambulatory Care Sensitive Hospitalizations Among Children with Autism Spectrum Disorder, and what I'm essentially getting out of this is that children with autism are more likely than children without to end up in the hospital unnecessarily. Is that really what you found?

Dr. Carbone: I think that's true, we looked at a cohort, or group, of children with autism who were hospitalized and we compared them to children in two other groups who did not have autism. We looked at 14 conditions for which they might be hospitalized, we call them ambulatory care sensitive conditions. That's a fancy way of saying that, for this particular condition, if you got good care in your outpatient setting in your doctor's office, you would be less likely to be hospitalized for that condition. So what we found is that children with autism, over half of all of their admissions were for ambulatory care sensitive conditions. Over half were potentially preventable.

Interviewer: So for a parent, this is really concerning because their child's ending up in the hospital where it could have been prevented at an earlier stage. Am I gathering that correctly?

Dr. Carbone: That is correct.

Interviewer: And for physicians that should be concerning because we're missing a lot of opportunities to keep children out of the hospital.

Dr. Carbone: That's what we hope that the findings of these studies indicate that there is an opportunity here to better address these groups of conditions in children with autism in the outpatient setting.

Interviewer: All right, so for parents and physicians, what are some of these conditions that if my child has it or if a child is in my office with it that maybe I should be paying a little closer attention to keep them out of the hospital.

Dr. Carbone: The group of conditions that we studied were derived from various organizations who have defined these conditions because tracking them turns out to be pretty important. Just to give you an idea, ambulatory care sensitive conditions comprise about a third of all hospitalizations in the United States. They cost about four billion dollars.

Interviewer: That's significant.

Dr. Carbone: They count for a million hospital days. So if we're trying to do better care and are trying to do it in a cost efficient way, these conditions are the money. So the conditions that we looked at were things like asthma, pneumonia, constipation, dehydration, epilepsy or seizure disorder, underweight, and mental health conditions which comprise a number of them like anxiety and mood disorder.

Interviewer: So what's happening here? Why are they going out of the office to the hospital with these particular conditions?

Dr. Carbone: Well that's a great question, and these data that we looked at, remember, we're just looking at a group of patients who are already hospitalized. So we can't follow these patients from the outpatient setting into the inpatient setting to look at what are the factors involved that got them into the hospital. All we can say here is that these conditions are more commonly seen in children with autism as a cause of their hospitalization compared with children without autism. But, we can always speculate because that's what we do when we come up with data.

About a quarter of all admissions in children with autism in the United States are for mental health conditions. That is an amazing statistic because the data set that we used called the Kids in Patient Database, or the KID, looks at hospitals across the country. We looked at over two million admissions. A quarter of all admissions for children with autism are for mental health conditions which is amazing because these hospitals aren't psychiatric hospitals, they're medical hospitals. So it really represents almost a failure of the system that somebody would be admitted to the hospital for a mental health condition.

Interviewer: Okay.

Dr. Carbone: So what I think one of the most important implications is we need to address these issues in a proactive way in the office, before they come to a head and the child eventually becomes, what I think probably happened with most of these admissions for mental health conditions, is the child becomes aggressive. Can't be managed at home, is then admitted and then stays in the hospital for that.

Interviewer: What about some of these other conditions?

Dr. Carbone: The other conditions, one that was very prevalent that drove a lot of the differences that we saw between the groups was epilepsy. And that's not entirely surprising because children with autism have a higher rate of epilepsy compared to children without autism. So we know that it's there. The challenge, I think, in the outpatient setting is how do we manage it so that we can reduce some of these admissions, and I think in children with autism if you think about them they're delightful people but they have deficits in social communication and they do a lot of repetitive behaviors. They need sameness all the time.

So how that manifests in the management of epilepsy is that I have a drug that I would use for this patient because of the type of seizure that he has, but he won't take that medicine because he doesn't take pills. So then I have to think of something else. Or, the child is simply not adherent with the medicine thereby necessitating a hospitalization because it gets out of control. So that's just one aspect of treating children with autism. They're not worse, they're not better, they're just different. So you have to have a plan B, a plan C, and a plan D for how to manage their conditions because sometimes they don't want to do plan A.

Interviewer: Sure, or plan B or C for that matter.

Dr. Carbone: Correct

Interviewer: So I think you gave us a couple of good takeaways for physicians, have those extra plans. What about parents. What should parents take away from this conversation?

Dr. Carbone: Well, I think that again, because of the very nature of these conditions, because they are ambulatory care sensitive, we want parents to focus on that relationship that they have with their pediatrician or primary care doctor in the office. And to me, I think it's really about a partnership. I've been taking care of kids in an ambulatory care setting in a clinic here at the university called the Neurobehavior Home Program for quite a while and we really focus on developing a relationship with families so they feel comfortable in telling us everything.

We give them a little bit more time. Our system of care is a bit different and I think that that's one of the problems in the system that we have. Most physicians see patients for five minutes and we really need that to be longer for patients with autism because it may take them 10 or 15 minutes just to get into the exam room.

Interviewer: And at the end of it all, that extra time could result in a child not needing to go to the hospital at some point.

Dr. Carbone: I can address many conditions in a visit, whereas my other colleagues in pediatric medicine can only address one per visit. So it allows me to sort of address some of these ambulatory care sensitive conditions and make sure we're managing them so that they don't escalate to where we're stuck and we have to go the hospital.

Interviewer: So what's next?

Dr. Carbone: These data are the first time that anything like this has been published about ambulatory care sensitive conditions in people with autism. I think they'll be helpful because since they were published in 2009, these data, now a newer version of the KID is coming out, so it presents an opportunity to follow this over time.

We've done a lot of things to help pediatricians take better care of children in the office setting since 2009. There's something called the Autism Treatment Network. The American Academy of Pediatrics has given a lot of guidance to pediatricians on how to manage these conditions in the office. So it will be fun to see over time if we're able to move the needle on the percentage of potentially preventable conditions.

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