Approximately 2,000 children have resective surgery each year in the United States to stop medication-resistant seizures. Pediatric epilepsy surgery has almost doubled in the last 10 years; however, despite the increase in these interventions, there remains a paucity of research that addresses long-term functional outcomes. This may contribute to known delays in referral for presurgical evaluation as well as parental and professional reluctance to consider surgery. It also contributes to added anxiety, uncertainty, and the lack of adequate resources and guidance for parents and clinicians dedicated to helping children achieve their full potential throughout the lifespan after pediatric epilepsy surgery.
On July 18, 2019, in Cleveland, Ohio, the Brain Recovery Project will convene a patient-centered outcomes research (PCOR) meeting of parents/caregivers, adult survivors, researchers, patient advocacy groups, and clinicians to discuss the research gaps that exist around the long-term functional impacts of resective and disconnective pediatric epilepsy surgery, across the domains of motor, orthopedic, sensory, behavioral, medical, cognitive, and social impairments across the lifespan. The group will develop a set of preliminary research goals and objectives, driven by the needs and gaps identified by parents, caregivers, and other stakeholders at the meeting.
Long-term objectives of this project include:
- Establishment of a cross-sector patient-centered outcomes research collaboration committed to advancing research on the long-term functional impacts of pediatric epilepsy surgery, which will better equip parents and caregivers to make informed decisions about their child’s care
- Development of a patient-centered research agenda, which identifies the top three to five research priorities and objectives related to the long-term functional impacts of pediatric epilepsy surgery
- Increase the body of research available on the long-term functional impacts of resective and disconnective pediatric epilepsy surgery addressing the course of motor, orthopedic, sensory, behavioral, medical, cognitive, and social impairments across the lifespan, and identify markers of improved quality of life as well as physical, behavioral, and adaptive therapies to improve outcomes in these domains
Projected project outcomes include:
- Parents, caregivers, and adult survivors will be engaged in identifying key research topics and questions most relevant to informing their healthcare and educational choices day to day and on a practical level.
- Parents, caregivers, and clinicians will be better informed decision makers when it comes to the long-term risks of pediatric epilepsy surgery, which will inform decision making regarding the cost/benefit of these types of pediatric epilepsy surgery.
- Parents and caregivers will have a research-informed roadmap to help them understand how to address issues their children face across the lifespan.
- Clinicians will be better informed on the functional implications of pediatric epilepsy surgery; they will have improved their informed consent process, and be better equipped to provide parents/caregivers with guidance on postoperative habilitation guidance.
Project Collaborators: Child Neurology Foundation, UCLA Mattel Children’s Hospital, Cleveland Clinic Children’s, Cook Children’s, Hemispherectomy Foundation