Q&A with Dr. Dan Coury, Faculty Chair of NICHQ’s Collaborative to Improve Autism Care

Dr. Coury discusses how working closely with families can improve systems that deliver care for children with autism.

November 15, 2012

Dr. Dan Coury
Dr. Dan Coury
NICHQ, in partnership with Autism Speaks’ Autism Treatment Network (ATN), is assisting 14 clinics across North America in making sustainable changes that improve care for children with autism spectrum disorder. The project, called the Collaborative to Improve Care for Children with Autism Spectrum Disorder, is focusing on bettering care for a handful of families in order to test and find successful treatment tactics to share on a wider scale. This quality improvement effort is targeting three specific areas that affect children with autism: long wait times for treatment, constipation, and insomnia.

Dan Coury, MD, a pediatrician who is the medical director of the ATN, chief of Developmental and Behavioral Pediatrics at Nationwide Children's Hospital, and the faculty chair of this improvement project, spoke with NICHQ Communications Specialist Kristina Grifantini on why these three areas are crucial for clinicians to address and how the project will achieve improvement.

Why did the project decide to focus on wait times, constipation and insomnia?

Firstly, autism is a very serious public health problem. From what we know about autism disorders and early intervention it’s important for us to be able to screen and identify these individuals as early in life as possible. Those who are entered into appropriate intervention programs often have improved outcomes. So one of the big priorities for this project is reducing wait times at clinics so children can get treatment as early as possible. If we can provide the right intervention early we have a lot of potential to reduce the burden of this disorder. Also, the expense to society over a lifetime for these individuals is going to be less if we’re able to have better outcomes through early identification and treatment.

The physical symptoms associated with autism are not as well recognized as the emotional and social issues, yet we’ve found that they are common. About half of the autistic children we see have some GI problems and almost two thirds have problems with insomnia. Despite the prevalence, parents report to us that their primary care providers aren’t sure how to treat these. While we don’t know what causes these medical comorbidities, what we do know is that families are frustrated and are looking to clinicians for help. So one of the things we’re trying to do through the improvement project is to more appropriately identify these problems and provide effective treatment for them.

The participating centers have made progress in improving care since the project’s start in 2011, such as improving information that goes to parents with newly diagnosed children, or making the clinic a better environment for families. However, we decided to focus more sharply on these three issues, which families have identified through past and ongoing surveys as areas of high priority.

How will sites use quality improvement techniques to shorten wait times?

Reducing wait times is crucial to improving access to care. Some sites across the country currently have up to a two-year wait list for the first appointment to begin work with a child with autism. A lot of time for development is lost during that delay.

Many programs feel that they are at capacity, and they may indeed be at capacity for their current model. The goal here is to closely examine that model and be certain that it is as efficient as it can be and see if there are ways that it can be improved.

For example, when you look at a waitlist that is four months long, you may find that between that first phone call and the appointment being made there’s a period of three weeks. And that’s because the site sends out a package of forms to be completed by the family, waits for them to be returned through the mail, reviews them and then determines who the most appropriate clinician is for that visit. Now you’ve waited three weeks of those four months. If we can get that process done in two days—by having the forms online or letting parents drop off the forms in person rather than mail them—we’ve shortened the wait by over two weeks without having to hire any additional personnel or getting additional clinic space.

Why do children with autism struggle with constipation and insomnia?

What we’ve found so far is that both physical symptoms are common and we see some improvement when we apply treatments used in typically developing children, such as increasing fiber or maintaining a regular bedtime schedule. However, it is more complicated with autistic children. And we don’t know at this point whether these problems are part of an autism subtype or are due to symptoms of autism.

Regarding constipation, individuals with autism typically have limited interest in varied activities and have a desire for things to be the same. That can carry over to them having a limited diet where they eat only a few foods and that could lead to a lack of fiber and perhaps a nutritionally below-average diet. We may also run into problems with sensory issues, where children with autism don’t like foods of a certain color, texture or taste. So it may be difficult to improve fiber in the diet, and perhaps they also have problems understanding that their bodies need to go to the bathroom.

For insomnia, one of the challenges is making certain the children understand it is bedtime and helping them adhere to a bedtime regimen. We need to look at any factors that might be interfering with them falling asleep—perhaps a dark room frightens them more than typically developing children. We also have techniques that can improve communication with the child to assist with going to bed. One technique is called visual supports, which is when you show pictures of what we’re going to do in a sequence. Pictures can help create a story when the child doesn’t understand the language. Some other behavior measures try to reinforce staying in bed and staying asleep. If the child is getting out of bed we have some tools to help families motivate the child to go back to bed.

And why is it important to address these physical symptoms?

Constipation and GI issues cause discomfort. When they’re improved, children feel better during the day and become more available for learning at school and for positive interactions with peers and adults.

Not getting enough sleep affects people’s behaviors the next day. For example, children can have a shorter attention span and more disruptive behavior, and are more easily set off. And that’s true in typically developed people as well as people on the autism spectrum, so if we can improve sleep we can potentially improve daytime behavior.

How will the clinical sites work with families of autistic children to improve treatment of constipation and insomnia?

The current plan is for each team to focus on one family for around three months, and then expand to five clinicians at each site working with five families for another three months. Through those five additional clinicians and families we continue to learn lessons and should see clear patterns of what is proving to be effective as well as any obstacles. Once a site completes its quality improvement assessment for one of the physical symptoms during these six months, it will switch to working with new families on the other symptom.

Starting this month, we are having one clinician work with one family and do whatever it takes to improve communication and regularly adjust the treatment plan so that we get results. Too often a common plan is for the family to call the office after a period of time—say 2 or 3 weeks—to report on whether a strategy was working, but the family may not remember to call. The family and clinic then don’t touch base until two months later, though the family might have found out within a week of their last visit that a treatment strategy wasn’t working. So we’ve lost seven weeks, when we could have made an adjustment earlier if we simply had more regular communications.

Participating sites will test, for example, whether calling or texting families on cell phones, or messaging by secure email, will result in more effective communication. They will collect patient-reported data at the same time (such as how many bowel movements a child has), which will give us a clear sign as to whether things are improving.

By focusing on more timely communication, continuous adjustment of the treatment plan and regular monitoring of the family, we hope to reach our ultimate goal of maintaining clinical momentum so the child’s condition improves.

How will this work benefit families not directly involved in the quality improvement project?

After we’ve gone through the quality improvement changes with the five families at each site, we will thoroughly review the lessons learned and look at what we need to do to put these new activities into place on a wider scale.

By the end, this work is going to help inform our overall model for treating individuals on the autism spectrum going forward and will be useful to autism treatment sites outside of our own network.