More than 500,000 children in the USA and Canada suffer from epilepsy today. Unmanaged, epilepsy can result in cognitive decline, social isolation and poor quality of life, and has substantial economic impact on families and society. 30% of children with epilepsy continue to have seizures while on anti-seizure medication, a condition known as drug resistant epilepsy (DRE). Properly selected, up to 70% of DRE patients become seizure-free after surgery. Nevertheless, epilepsy surgery carries with it risks proportional to its level of invasiveness. As a result, 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. To address the knowledge gap and ethical considerations surrounding novel neurotechnological interventions and the pathway to their adoption for pediatric DRE, we will use a pragmatic neuroethics framework to:
Aim (1) engage affected families and clinicians in focus groups in the USA and Canada to identify critical features for choices about procedural trade-offs, values, and concerns for decision-making and communication about neurotechnological interventions for pediatric DRE;
Aim (2) apply the findings from Aim 1 to a discrete choice experiment (DCE) online survey to determine the value placed on key attributes (e.g., risks, benefits, compliance, reversibility) of decisions surrounding conventional and novel DRE interventions among families affected by DRE, and clinicians who care for them in the USA and Canada; and, Aim (3) integrate the findings from Aims 1 and 2 to 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 the unique ethical challenges for children with DRE whose bodies, brains, experiences, and goals are still evolving, and for whom neurosurgical innovations are imminent. The focus on children speaks directly to the goals articulated in the visions of the RFA and BRAIN 2025 pertaining to advances in neurotechnology and its effects on personal identity, agency, and perception of normality, risk/benefit analyses and consent issues, ethical implications of evolving neuromodulation technologies, invasiveness, and special populations.
Innovative neurotechnologies have extended the range of treatment options for pediatric patients with drug resistant epilepsy (DRE), however, decision-making for conditions that affect children?s brains is ethically challenging given the possibility of lifelong effects on memory, learning, personality, and quality of life. In this neuroethics research, we will use focus groups and online surveys to uncover the most important factors that families and clinicians value in making choices about new kinds of neurotechnologies for DRE management. Based on our findings, we will deliver resources for families and clinicians to aid decision-making, clinician counseling, and care. !
