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.
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.
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.
Building a learning community
The program Joshi is developing is far from the traditional approach to pushing education out to community providers.
“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.
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.”