Transforming Care in Pediatric Epilepsy with the Pediatric Epilepsy Learning Healthcare System (PELHS)
At NewYork-Presbyterian/Weill Cornell Medicine, child neurologists are spearheading an innovative national initiative to transform the care of children with epilepsy. Launched in 2017, the Pediatric Epilepsy Learning Healthcare System (PELHS) is a consortium of U.S. academic pediatric epilepsy centers that seeks to reduce seizures and their consequences for children with epilepsy through cycles of health data collection and analysis, dissemination of new evidence, and practice change.
“There are so many decisions that we clinicians make when we’re taking care of children, but too often there is not enough scientific evidence to help guide those decisions,” explains Zachary Grinspan, MD, MS, Director of the Pediatric Epilepsy Program at NewYork-Presbyterian/Weill Cornell Medicine and the NewYork-Presbyterian Komansky Children’s Hospital at Weill Cornell Medical Center who serves as the Principal Investigator of PELHS. “And when there are potentially impactful results published in the academic literature, it can take years before the findings make their way into clinical practice.”
“PELHS uses health information technology (IT) support to engineer rapid cycles in which we look at our outcomes and change our practice accordingly,” he says. “It will enable us to test theories about what works and what doesn’t work — and then implement changes across multiple institutions.”
“In addition to clinicians and researchers, people with epilepsy and their caregivers are integrally involved in PELHS research and quality improvement efforts,” adds Dr. Grinspan. “This makes our team truly multidisciplinary. We are all together on the frontlines to jumpstart improvements in the lives of children with epilepsy.”
Currently, PELHS consists of 25 pediatric epilepsy member centers, 11 of which have already sent their electronic health record data for processing. “Our goal is to get as many pediatric epilepsy centers into this network as possible to rapidly improve outcomes for these kids.”
In 2017, after receiving a generous grant from the Pediatric Epilepsy Research Foundation, Dr. Grinspan and the PELHS leadership core, which includes Anup Patel, MD from Nationwide Children’s Hospital, Renée Shellhaas, MD from Michigan Medicine, Anne Berg, PhD from Northwestern Medicine, and Jeffrey Buchhalter, MD, PhD from Phoenix, AZ built the PELHS infrastructure to collect and process member centers’ electronic health records data.
Next, the team aimed to demonstrate the value of PELHS in a series of quality improvement projects using American Academy of Neurology/Child Neurology Society measures.1 These include defining contemporary variations in quality of care for infantile spasms (e.g., first line treatment); timeliness of treatment for patients with status epilepticus, a neurological emergency in which seizures do not spontaneously stop; and treatment for resistant epilepsy (e.g., referral to epilepsy specialists).
“Our first result was the analysis of infantile spasms (IS) based on data from 11 centers and we found that roughly 1 in 10 infants with IS did not receive the recommended first line therapy within one week of diagnosis” says Dr. Grinspan. “While Weill Cornell performed well on this measure, we’re working together with our centers to think through our care processes so that all children with infantile spasms receive first line therapy.”
After quality improvement research, PELHS’s second domain of inquiry will be observational comparative effectiveness research, a powerful tool to identify opportunities to improve outcomes. “For infants with new onset epilepsy, epidemiological data has shown that levetiracetam was superior to phenobarbital,” says Dr. Grinspan. “We want to compare these two medications to really understand this effect and confirm if this finding is real.”
PELHS’s third domain of inquiry will focus on surveillance and epidemiology. “We will explore death in children with epilepsy to examine the cause of death and identify preventive measures,” says Dr. Grinspan. “This is a particularly relevant topic in the wake of the highly-publicized death of Disney Channel star Cameron Boyce, who died from SUDEP — sudden unexpected death in epilepsy.”
With funding from the Pediatric Epilepsy Research Foundation, the Epilepsy Foundation, the BAND foundation, and the Schapiro Family Foundation, PELHS is poised to support and promote collaborative efforts among its member centers. “Participating centers will each create a rich local database of administrative data for use in local quality improvement initiatives and research projects by residents, fellows, faculty, nurses, and social workers,” says Dr. Grinspan.
“We are also enthusiastic for our data to be used for mentored research,” adds Dr. Grinspan. “As investigators, we recognize the importance of mentors in our own careers, and we are committed to developing the next generation of pediatric epilepsy clinical researchers.”
Drawing from the collective body of scientific evidence, each PELHS member center will tailor optimal care to its own setting and to each individual patient. At the NewYork-Presbyterian/Weill Cornell Medicine’s Pediatric Comprehensive Epilepsy Program, the immediate beneficiaries of PELHS are the children with epilepsy who are receiving expert care, particularly in early-onset epilepsy and refractory epilepsy.
“I have the privilege of wearing two hats as the Principal Investigator of PELHS and as the Director of Clinical Epilepsy here at Weill Cornell,” says Dr. Grinspan. “We will be the earliest adopters of PELHS data collection tools, and we will pilot and use them here and across our local network in New York City. Additionally, the Department of Pediatrics at Weill Cornell has a very strong and enduring commitment to quality improvement, so we have a natural partner to ensure we deliver the highest possible level of care to our patients.”
“Furthermore, many of our physicians are innovators, and are already using novel and creative therapies for our most vulnerable patients,” adds Dr. Grinspan. “We will be looking for ways to share these new approaches with our colleagues. Conversely, if we find an area of deficit in our own practices, we can rapidly implement what others are doing.”
Dr. Grinspan is grateful to his collaborators for bringing PELHS to life. “My collaborators are an inspiring group of investigators that have made creating PELHS both professionally and personally rewarding,” says Dr. Grinspan. “We have been talking about building this type of network for years, but only in the past four years have we developed the skills to make this work. It is profoundly exciting to think we on a path to better health outcomes and quality of care for children with epilepsy.”
Patel AD, Berg AT, Billinghurst L, et al. Quality improvement in neurology: Child neurology quality measure set: Executive summary. Neurology. 2018;90(2):67-73.