Improving Access to Care for Children with Epilepsy in Michigan

Not all children with epilepsy have access to specialized care and may risk serious and far-reaching side effects. U-M is leading a collaborative to change this situation.

7:00 AM

Author | Rebecca Priest

Thirty percent of Michigan's land mass is located in the Upper Peninsula (UP) — a sparsely populated area the U.S. Office of Management and Budget categorizes as medically underserved.

SEE ALSO: Are Doctors Overmedicating Newborns with Seizures?

Compounding that, the entire state of Michigan is classified as undergoing a primary care physician shortage.

It's not an uncommon scenario for many areas of the country. But for children with chronic medical conditions such as epilepsy, the statistics are particularly problematic.

A major health concern

Epilepsy is one of the most common neurological disorders, with about 1 in 26 Americans receiving an epilepsy diagnosis at some point in their lifetimes. It affects up to 1 percent of children, with an even higher incidence among children with special needs.

The condition, defined by recurrent, unprovoked seizures, is often accompanied by under-recognized, serious medical, psychiatric, educational and social effects.

Although children and youths represent one of the fastest-growing populations epilepsy affects, many do not have access to pediatric neurologists and the high-quality coordinated care provided in a medical home.

Unfortunately, the risks for children with refractory epilepsy are particularly high and include the potential for reduced cognition and academic performance, restrictions on activity and quality of life, and heightened risk from sudden unexpected death in epilepsy (SUDEP). Further, as these children and adolescents get ready to graduate from school and enter adulthood, there is no systematic program to prepare them to transition to adult care.

"Early recognition of individuals with refractory epilepsy who may benefit from specialized treatments has the potential to mitigate these risks. But many rural providers just don't see enough of these cases to confidently manage the care of complex epilepsy patients," says Sucheta Joshi, M.B.B.S., M.S., F.A.A.P., a pediatric neurologist specializing in epilepsy care.

That's where doctors at University of Michigan C.S. Mott Children's Hospital come in.

Joshi and her colleagues at U-M were recently awarded a $1.2 million grant from the Health Resources and Services Administration to establish a multifaceted, community-based system of education and care for children with epilepsy throughout the state.

Epilepsy should be treated the same way no matter where you live. All kids deserve the same level of care.
Sucheta Joshi, M.B.B.S., M.S., F.A.A.P.

Building a learning community

The program Joshi is developing is far from the traditional approach to pushing education out to community providers.

SEE ALSO: Small, Rural Hospitals May Be Safer for Common Operations

"Our goal is to build a robust network of learners that will collaboratively enhance knowledge across the network about how to better care for these kids."

Included in the program's goals are efforts to use telemedicine capabilities to provide remote consultations, and to create mechanisms to support adolescents with epilepsy as they transition into adulthood and their own care management.

Another noteworthy aspect of the U-M initiative is the involvement of patients and families themselves in designing and implementing the program.

"Our best chances of getting this right are to listen to the patient and family perspective as we build these programs," says Joshi.

Familiar ground

Joshi is in a unique position to lead the charge. As the director of pediatric telemedicine at C.S. Mott Children's Hospital, medical director of the American Academy of Pediatrics-led Coordinating Center for Children and Youth with Epilepsy and an executive committee member of the academy's Section on Neurology, she's spent much of the past several years championing support for this type of endeavor at a federal level.

On a more local level, Joshi and her team are already in the trenches.

Working with the Michigan Department of Health and Human Services, she and her team have established relationships with three primary care clinics in the lower peninsula (LP) of Michigan and one in the UP to provide coordinated epilepsy care using telemedicine. These clinics follow children with epilepsy while keeping their care coordinated through their medical homes.

Joshi and her team plan to add another LP pediatric and adolescent health center this year in addition to multiple sites in partnership with UP providers and federally qualified health centers serving a number of communities in the UP.

Joshi describes a relationship they've established with a community pediatric neurologist in Marquette, the largest city in the UP.

"Dr. Martyanov is able to manage her patients' care with their local primary care physicians. The patients' care remains based out of their medical home, but we're available to consult remotely as needed for advanced epilepsy treatments."

This can be particularly helpful for care that requires a higher level of specialization. For families interested in integrating the ketogenic diet into their treatment plans, for example, dietitians and pediatric epileptologists from the C.S. Mott Children's Hospital Level 4 Pediatric Epilepsy Center are able to consult with Martyanov and her patients in using the highly specialized diet for children who don't respond well to traditional epilepsy therapies.

"In the past, these kids would have had to travel to Ann Arbor for this level of support, and for many of them that might not have been feasible. Telemedicine changes the game completely," Joshi says.

School-based health centers are another partner for care delivery. These centers will support improved access to quality epilepsy care in the local community and are well placed to partner in patients' transitions to adulthood. U-M is also working with Northern Michigan University on a pilot program to support college students and provide tools for their successful transitions into adult care.

The U-M grant is one of seven awarded nationwide, with each site committed to sharing best practices and some level of standardization. The ultimate goal, after all, is to create models that can be scaled and expanded to rural areas across the nation.

"Epilepsy should be treated the same way no matter where you live," says Joshi. "All kids deserve the same level of care."

More Articles About: Rounds Children's Health epilepsy Neurological (Brain) Conditions
Health Lab word mark overlaying blue cells
Health Lab

Explore a variety of healthcare news & stories by visiting the Health Lab home page for more articles.

Media Contact Public Relations

Department of Communication at Michigan Medicine

[email protected]


Stay Informed

Want top health & research news weekly? Sign up for Health Lab’s newsletters today!

Featured News & Stories Epilepsy tracking for children and teens
Health Lab
Preparing Adolescents With Epilepsy to Manage Care through Adulthood
Assessment tool helps doctors ensure adolescents and young adults with epilepsy have the skills and confidence they need to take control of seizures and health care.
Illustration of red blood cells and bacteria in the bloodstream
Health Lab
New device can treat injury from sepsis
The FDA approved the use of a therapeutic device invented and developed at the University of Michigan for use in children with acute kidney injury and sepsis or a septic condition requiring continuous kidney replacement therapy.
Photo of a cluttered, messy garage
Health Lab
Chemicals stored in home garages linked to ALS risk
A Michigan Medicine study finds that storing chemicals in a garage at home may associate with an increased risk of ALS.
Dinero is back to being an active toddler following a kidney transplant
Health Lab
Formula prescription helps 2-year-old receive kidney transplant
Dinero's pediatric nephrology team developed a tailored formula to address his mineral deficiencies due to his chronic kidney disease, maintain nutritional health and avoid dialysis.
Illustration of teenager lying in bed while images above depict an F grade on paper and classroom
Health Lab
2 in 3 parents say their adolescent or teen worries about how sick days may impact grades
National poll: 1 in 5 parents consider if their child needs a mental health day; 1 in 4 say attendance policies are challenging for kids with medical conditions
Health Lab
Father’s cancerous brain tumor found weeks after the birth of his daughter
Father’s cancerous brain tumor found weeks after the birth of his daughter