This blog post discusses some of the key findings from a poster presentation for the 2021 annual meeting of the American Academy of Neurology (abstract here) and published in the Journal of Child Neurology (2021, paper here).
Neurotechnologies that can change certain functions of the brain may help children with a type of epilepsy that responds poorly to anti-seizure medication (drug-resistant epilepsy). However, there are important differences in the way that parents and doctors make treatment decisions about them.
For parents and caregivers of children with drug-resistant epilepsy (1), treatment choice goes beyond just the direct effect of the treatment on the child’s seizures. They also consider their child in context of the world and their overall quality of life (2). For doctors, treatment choice focuses on the evidence of effectiveness and the seizures themselves (3,4). Understanding both the shared and different decision-making priorities for these groups requires deeper insight into the values that drive them.
The promise and uncertainty of neurotechnologies
Neurotechnologies use innovative techniques to alter brain activity in two main ways: electrical stimulation (i.e., neuromodulation) or the removal of diseased tissue. Modern examples include responsive neurostimulation and laser interstitial thermal therapy. These treatments are gaining in popularity because of their perceived benefits, such as reversibility and limited invasiveness.
Given the special developmental needs of children, we wanted to better understand the trade-offs of benefit and risk. We talked to parents and doctors caring for children with drug-resistant epilepsy across Canada and the USA. We asked them to identify the most important factors they consider when weighing novel neurotechnologies against traditional neurosurgery.
For parents, quality of life is key
When asked about new forms of neurotechnology to treat their child’s epilepsy, parents highlight the benefits including – but also beyond – seizures. Specifically, parents identify quality of life as a crucial factor. This includes life factors such as independence and freedom from the side effects of medication.
“Can they [our child] hold down a job? Can they have a house? Can they get married and have a life? To me, that was important,” said one parent.
Doctors mainly discuss seizure freedom as a measure of success. As one doctor stated, it’s important to consider multiple factors, including quality of life, but that “the big [measure] is seizure control, decreased seizure frequency, and then seizure freedom.”
Not all information is equal
For doctors, scientific evidence is the main factor in considering a new procedure, and to prioritize safety and trust. Introducing novel treatments is therefore challenging (5), because they lack clear evidence while they are being studied, especially in children.
Parents struggle to meet all kinds of information needs. They describe spending hours learning online from a range of sources–from academic articles to blog posts. The credibility and readability of these online resources varies greatly, and they report that reliable sources of information are sometimes difficult to identify.
One parent commented, “[Once the information is] on the internet …we have to decipher whether it’s real.”
Many parents suggest that it would be helpful to receive objective materials directly from hospitals or epilepsy centers.
Preserving trust for novel treatment decisions
Novel treatments disrupt conventional decision-making paradigms. Understanding the different ways medical professionals and parents approach treatment decisions can ease the experience of choosing treatment.
Parents maintain a high degree of trust in their doctors and medical team. Incorporating the different perspectives of families, young patients, and physicians preserves trust and supports inclusive clinical practice.
See the poster above for an overview of the results.
Acknowledgements to the leaders of this work Dr. Judy Illes (PI) and Dr. Patrick McDonald (Co-PI). I thank our collaborators Dr. Mary B. Connolly, Dr. Mark Harrison, Dr. George M. Ibrahim, Dr. Robert Naftel, and Dr. Winston Chiong, Dr. Urs Ribary and other members of the Neuroethics Canada team. This work is supported by: the National Institutes of Health grant (JI) 1RF1 # MH117805, Canada Research Chairs Program (JI), and the UBC Alcan Chair in Neurosciences (PJM).
- Kwan P, Arzimanoglou A, Berg AT, Brodie MJ, Hauser WA, Mathern G, et al. Definition of drug resistant epilepsy: Consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies. Epilepsia. 2010;51(6):1069–77.
- Hrincu V, McDonald PJ, Connolly MB, Harrison MJ, Ibrahim GM, Naftel RP, et al. Choice and Trade-offs: Parent Decision Making for Neurotechnologies for Pediatric Drug-Resistant Epilepsy. J Child Neurol. 2021 Jun 2;08830738211015010.
- McDonald PJ, Hrincu V, Connolly MB, Harrison MJ, Ibrahim GM, Naftel RP, et al. Novel Neurotechnological Interventions for Pediatric Drug-Resistant Epilepsy: Physician Perspectives. J Child Neurol. 2020 Oct 28;0883073820966935.
- Kaal KJ, Aguiar M, Harrison M, McDonald PJ, Illes J. The Clinical Research Landscape of Pediatric Drug-Resistant Epilepsy. J Child Neurol. 2020 Jun 16;0883073820931255.
- Iserson KV, Chiasson PM. The Ethics of Applying New Medical Technologies. Semin Laparosc Surg. 2002 Dec 1;9(4):222–9.
Viorica Hrincu, MSc is doing her PhD in Experimental Medicine at the University of British Columbia in the Neuroscience Engagement and Smart Tech (NEST) lab.