CURE Funds Workshop on Pediatric Epilepsy
A manuscript from the workshop “Priorities in Pediatric Epilepsy Research: Improving Children’s Futures Today” will be published in the August 21 issue of Neurology®, the medical journal of the American Academy of Neurology. Epilepsy affects 1/26 people over the course of the lifespan; 10 percent of that risk is concentrated in the first two to three years of life.
Citizens United for Research on Epilepsy (CURE) funded the workshop which focused on infants and toddlers with epilepsy, and involved stakeholders including pediatric epilepsy care providers, educators, clinical researchers, and, most importantly, parents of children with epilepsy. Four themes came out of the workshop: patient outcomes, diagnosis, role of parents and resources outside the medical system; all with an emphasis on early onset epilepsy for children three and under.
“As the mother of a daughter who developed epilepsy during this vital time in her development, I know how critically important control of early life seizures is,” said Susan Axelrod, CURE’s Founding Chair. “I was personally proud of CURE's support and involvement with this workshop because we must pull together all available resources to prevent the lifelong and serious effects epilepsy so often has on children. Workshops like this give these children the best shot at a normal, healthy life."
Early, accurate diagnosis of the specific type of epilepsy and the cause with optimal treatment selection for the individual child is seen as the means for achieving the best outcomes.
“Research repeatedly shows that the longer seizures are left unchecked, especially in the very young, the worse the developmental outcomes tend to be. Wasted time is wasted brain. These are life-long consequences,” said Anne Berg, PhD, research professor at Northwestern University Feinberg School of Medicine and Ann & Robert H. Lurie Children’s Hospital of Chicago. “Unfortunately, we often don’t think about specialized care until it is too late.”
One approach discussed was to employ comprehensive or specialty care right from the start rather than waiting until a child is clearly having difficulties. There is no single definition of what comprehensive or speciality care is. The National Association of Epilepsy Centers has standards for level 3 and 4 epilepsy centers which emphasize surgical therapy, largely for adults, and little is discussed regarding other therapies, particularly the ketogenic diet and immonmodulatory treatments that may, in some circumstances, be extremely beneficial in very young patients. The collaborative team environment or the speed with which diagnosis and interventions must occur, and the role of and the impact on parents is rarely a major focus in defining comprehensive pediatric are.
“We have a wealth of information, diagnostic capabilities and treatment options. Unfortunately, we have expended little effort in learning how best to use our vast knowledge and technologies to maximize patient outcomes,” said Douglas Nordli, MD, Epilepsy Center Director at Lurie Children’s and Professor of Pediatrics and Neurology at Northwestern University Feinberg School of Medicine. We cannot treat and cure all of these epilepsies yet, but there are a large number for which, if we get to them early, we can have a huge impact.”
Another important theme raised in the meeting centered on parents. Because parents are part of the treatment team, clear, accurate communication with them is essential to delivery of care. In addition, not all of the care young children with epilepsy need is medical. Resources in the school and community are also critical in optimizing patient outcomes and alleviating the impact on the families.
“In the current changing healthcare climate, we need a focus on patient-centered outcomes and research. This is an area where health services and clinical research can provide the link between basic science and technological discoveries and utilizing those discoveries to achieve the ultimate goal of improving the health and lives of individuals,” said Patrick Magoon, President and CEO of Lurie Children’s.
Ann & Robert H. Lurie Children’s Hospital of Chicago is a state-of-the art hospital located on the campus of its academic partner, Northwestern University Feinberg School of Medicine. The hospital is ranked as one of the nation’s top children’s hospitals in U.S.News & World Report. The hospital relies on philanthropic support to care for more than 148,000 children each year.
To read the full manuscript [PDF]: click here.
Contact: Public Affairs, Lurie Children’s 312-227-4600