A team led by Professor of Neurology Judy Illes and Professor of Surgery Patrick McDonald will explore ethical issues confronting families and clinicians when considering new treatment options for drug-resistant epilepsy in children.
The National Institute of Mental Health, part of the U.S. National Institutes of Health, has awarded a three-year, $750,000 grant to the team, which also includes Clinical Professor of Pediatrics Mary Connolly and Mark Harrison in the Faculty of Pharmaceutical Sciences.
More than 500,000 children in the U.S. and Canada suffer from epilepsy, which if unmanaged can result in cognitive decline, social isolation and poor quality of life, and has substantial economic impact on families and society. About a third of children with epilepsy continue to have seizures despite taking anti-seizure medication, and for them, surgery has been another effective treatment.
Due to the risks inherent in surgery, a variety of less invasive interventions have been developed, including MRI-guided laser interstitial thermal therapy, robot-assisted stereo-EEG, stereotactic radiosurgery, vagal nerve stimulation, and responsive neurostimulation. Unlike novel pharmaceutical treatments, these interventions are rarely put through the rigors of a randomized controlled trial, nor are the outcomes of adult trials clearly generalizable to children.
Dr. McDonald, the Alcan Chair in Neurosciences and Head of Pediatric Neurosurgery, and Dr. Illes, Canada Research Chair in Neuroethics and founding Director of Neuroethics Canada, will lead an effort to address the knowledge gap and ethical considerations surrounding novel neurotechnological interventions and the pathway to their adoption for pediatric drug-resistant epilepsy. It will use a pragmatic neuroethics framework to engage affected families and clinicians in focus groups to identify critical features for choices about procedural trade-offs, values, and concerns for decision-making and communication about neurotechnological interventions for pediatric DRE.
The team, which also includes George Ibrahim at the University of Toronto and Eric Racine at McGill University, will apply their findings to a discrete choice experiment online survey to determine the value placed on key attributes (e.g., risks, benefits, compliance, reversibility) of decisions surrounding conventional and new interventions among families affected by drug-resistant epilepsy, and clinicians who care for them. The researchers will then develop, evaluate and deliver patient-directed resources in the form of infographics and informational materials and videos, and clinician resources for family decision-making, clinician counseling and care.
The significance of this work lies in identifying unique ethical challenges for children with drug-resistant epilepsy whose bodies, brains, experiences, and goals are still evolving, and for whom neurosurgical innovations are imminent.