Abstract
Objective: To address knowledge gaps and ethical considerations surrounding the adoption of novel neurotechnological for pediatric drug resistant epilepsy (DRE).
Background: Minimally invasive and neuromodulatory interventions may be effective alternatives to conventional epilepsy surgery for pediatric DRE. Adoption of these novel treatments must accompany the priorities and values of caregivers of children with DRE. By engaging physicians and families to determine the ethical parameters, we seek to promote decision-making on this evolving technological landscape.
Design/Methods: We recruited pediatric epileptologists and neurosurgeons across Canada and the US to participate in one of four focus groups at national conferences (n=33). We recruited parents and primary caregivers of children with DRE to one of three focus groups, or to individual interviews, through clinics (n=22). Discussions were analyzed using qualitative content analysis.
Results: Major thematic branches - physicians: 1) clinical decision-making and 2) ethical considerations. Under clinical decision-making, scientific evidence and patient candidacy were significant subthemes. Ongoing seizures without intervention was a risk to neurodevelopment and safety. Under ethical considerations, resource allocation and external financial pressures were significant subthemes, having a profound impact on technology adoption and access.
Major thematic branches - families: 1) features of the intervention, 2) decision drivers, and 3) information. Under features of the intervention, parents assessed the overall risk-benefit ratio of the neurotechnology, emphasizing quality of life. Parents acknowledged the risks of doing nothing, but expressed an aversion to invasive procedures. Under decision drivers, trust in the physician was a significant subtheme. Parents were determined to overcome treatment costs; specific access concerns varied by region. Under information, personal research–especially online–dominated the subtheme.
Conclusions: Physicians and caregivers identify shared and divergent ethical and contextual factors affecting decision-making for novel neurotechnological interventions for pediatric DRE. Healthcare delivery can be maximized through the alignment of stakeholder treatment perspectives, values, and priorities.
Disclosure: The institution of Dr. Illes has received research support from NIH, CIHR, Technical Safety BC, WorkSafeBC, North Growth Foundation, Dana Foundation. Dr. Illes has received intellectual property interests from a publication relating to health care. Dr. Illes has a non-compensated relationship as a Principal Investigator, Canada Research Chair with NIH and CIHR that is relevant to AAN interests or activities. Ms. Hrincu has received personal compensation for serving as an employee of LoginRadius. The institution of Patrick McDonald has received research support from National Institutes of Health. Dr. Connolly has nothing to disclose. The institution of Mark Harrison has received research support from Canadian Institutes of Health Research. The institution of Mark Harrison has received research support from Michael Smith Foundation for Health Research. The institution of Mark Harrison has received research support from National Institutes of Health. The institution of Mark Harrison has received research support from Candian Rheumatology Association . George Ibrahim has nothing to disclose. Robert Naftel has nothing to disclose. The institution of Dr. Chiong has received research support from the National Institutes of Health. Dr. Chiong has received personal compensation in the range of $500-$4,999 for serving as a member, NeuroEthics Working Group with National Institutes of Health. Farhad Udwadia has nothing to disclose. Urs Ribary has nothing to disclose.
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