COLUMBIA — What stands between a worried parent and the relief that comes with having answers about a child can seem as simple as a full tank of gas, a day off work and an appointment.
But those things can become insurmountable obstacles for people living in rural areas.
A new joint effort of MU's Thompson Center for Autism and Neurodevelopmental Disorders and Missouri Telehealth Network aims to make the inconvenience of distance irrelevant. The ECHO Autism project will provide health care providers in rural areas with the training they need to screen and recognize autism in places as far-flung as Poplar Bluff.
Kristin Sohl, the Thompson Center's medical director, calls the process "moving knowledge instead of people" by utilizing Skype technology to connect specialists in Columbia with primary care physicians in other areas of Missouri. Those participating just need Internet connection and a forward-facing camera.
ECHO projects are part of a growing health care trend called telehealth. It uses video conference technology to provide care to patients where they live. Providers in more than 40 specialties and subspecialties serve 72 Missouri counties from 220 telehealth sites, according to Mirna Becevic, the associate director of the Missouri Telehealth Network. These specialists provide one-on-one specialized care to patients.
ECHO projects use similar videoconferencing technology, but with specialists providing instruction to other health care providers instead of providing care directly. Sohl said this allows specialists to increase autism knowledge exponentially rather than treat one patient at a time, bringing best practices in autism care to primary care.
A national trend
The concept originated with a liver specialist, Sanjeev Arora, in Albuquerque, N.M., according to the University of New Mexico. In 2003, thousands of New Mexicans seeking treatment for hepatitis C overwhelmed the small number of specialists who could treat them in rural New Mexico. Arora was working at one of the only two clinics that treated hepatitis C in the state.
Arora sought to fix that with the first Project ECHO, or Extension for Community Healthcare Outcomes. The idea was to use video chat software like Google Hangouts to create an online network of health care providers. Doctors in rural New Mexico could join a Skype call with Arora, and he could teach them about hepatitis C and how to treat it. This allowed patients to receive treatment locally, avoiding long drives and waitlists.
Today, there are 39 variations of the first Project ECHO, operating in 22 states and five countries, according to the University of New Mexico. A national ECHO project treats chronic pain, another focuses on rheumatology and several others treat hepatitis C.
Missouri's ECHO Autism launches Wednesday, with pediatricians and primary care physicians from around the state joining a group of Columbia-based specialists: autism and developmental pediatric specialist; child and adolescent psychiatrist; clinical child psychologist; clinical dietician; resource coordinator and parent educator. The doctors joining the group's conference calls will hear about specialized techniques for treating autism and be able to ask questions about specific patients.
Demand, obstacles for autism care
Sohl began the project knowing there is a high demand for specialized autism care in Missouri. The waiting list for treatment at the Thompson Center is nine to 10 months.
Sohl estimated that there are between 10 and 15 developmental pediatricians, child and adolescent psychiatrists and clinical child psychologists who have autism experience in Missouri.
Part of the problem arises from a lack of emphasis on autism education in medical schools. Pediatricians spend a month of their three-year residency learning about developmental disorders such as autism, and family practitioners spend less, Sohl said.
Alicia Curran, the parent educator for the project, encountered this when she lived in Rolla, Missouri, in 2003. Her son, Sam, was 3 years old and showing early signs of autism: He had not spoken a word, made limited eye contact, did not point at objects, would not regularly respond to his name and did not play with toys appropriately.
Curran knew something wasn't right, but she and her pediatrician knew little about autism. During his time off work, her pediatrician searched for reliable medical articles to provide the answers Curran desperately needed.
Sam Curran was diagnosed with autism at age 3 at a speech clinic in Chicago. When the Thompson Center opened two years later, the Currans made the hour-and-a-half trip to Columbia for treatment. They now live in Columbia.
Hesitation to screen for autism
Autism treatment is complex. It's common to have a number of diagnoses in addition to autism, including anxiety, ADHD, seizure disorders, intellectual disability, sleep problems and GI problems. Without specialized knowledge, an ear infection can go untreated because the fussiness is attributed to behavioral problems.
Autism's complexities can make doctors hesitant to recognize and screen for autism, Sohl said.
"Autism is so complex, and primary care physicians don't have all the tools in their toolboxes to say, 'It's autism,'" she said. "So, a lot of them end up saying, 'They'll be fine,' and they're not fine."
Sohl said patients need more evaluation.
Without it, a patient's diagnosis is delayed. The Centers for Disease Control and Prevention recommends screening for autism between 18 and 24 months of age.
In reality, it happens much later for many people. Jasmine El Khatib, a pediatrician in both Jefferson City and Fulton says it's common for parents to notice something is wrong with their child early in life. But kids don't come to her office until they are about to enter preschool or kindergarten, between 4 and 5 years old, due to parents' circumstances, such as financial issues and lack of insurance.
class="p1">"So by the time I see them, we are definitely behind the ball, and they need supportive services and help immediately," El Khatibsaid.
But "immediately" is often bogged down by other issues. There are the long waiting lists at specialist centers like the Thompson Center. Patients may also lack transportation to the centers or medical insurance to cover the visits.
El Khatib said it can be difficult to know what the obstacles are for patients, so her outreach team has to do extra work to ensure patients make their follow-up appointments.
If the ECHO project works, primary care physicians will be able to effectively screen and treat patients in their clinics, and only those needing a specialist will get a referral to the Thompson Center.
"The research on ECHO projects has shown the same or better outcomes in the people treated in their own communities than those who drive out to the 'ivory towers,' the academic centers, to get their treatments," Sohl said.
"I hope to be able to better streamline patients from point A to point B," El Khatib said.
If ECHO Autism works, then point B won't be miles away for Missouri's rural patients. It'll be in their hometowns.
Supervising editor is Katherine Reed.