Novel Epilepsy Treatments: Factors That Matter the Most to Parents and Doctors

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.

For an overview of neurotechnologies in pediatric epilepsy, see this blog post.
For the views of youth on neurotechnology, see Udwadia et al.’s paper.

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).

References

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.

Rights and meanings: Advanced technologies for disorders of the brain

This blog post follows on a three minute presentation at the 2020 International Neuroethics Society Meeting that won the Springer Book Prize for “Best Overall Contribution: Clinical Neuroethics”.

I acknowledge that Neuroethics Canada is situated on the traditional, ancestral, unceded territory of the Musqueam people, and express my thanks as a settler to live, work and study on this territory.

Introduction

What are the meanings, values, priorities, and responsibilities surrounding equitable and meaningful access to advanced neurotechnologies for diverse populations?

Advanced neurotechnologies are applied in functional neurosurgery: an important class of brain surgery that aims to ameliorate severe neurologic and mental health conditions that do not respond to pharmacological and other therapies. The interventions are broadly classified as neuromodulation, ablation, and resection, and one well known example is deep brain stimulation (see this blog post by Hrincu et al. for applications in pediatric epilepsy). However, alongside rapid advancements in the field of advanced neurotechnologies, there have been reports of disparate access in both Canada and the USA. Five studies have reported racial disparities for African-American populations in the USA (1,2,3,4,5). Reduced access has also been reported for certain provinces and regions in Canada (6,7,8).

Map
Map of the major functional neurosurgery centres in Canada as of January 2021, demonstrating the unique challenge of serving geographically dispersed populations. Image created by the author.

Despite the diversity of populations living in both countries and the global availability of these interventions, there has been limited exploration of how various cultural groups may differentially conceptualize and relate to the use of functional neurosurgical interventions.

Consultations

We consulted with 29 key informants with diverse expertise in Indigenous health and Western medicine about neurotechnologies for diverse geographic and cultural communities (Harding et al., manuscript in preparation). Our analysis of the interviews is revealing that differences in the meanings and perspectives held by patients and physicians about interventions to the brain are significant barriers to receptivity and access. Innovations in telehealth, education, and low maintenance neurotechnologies are significant facilitators to access. Results from a survey we administered at the end of the interviews with medical professionals show a striking contrast between ratings of the imperative of access for people living in rural and remote areas and the realities of such access to neuromodulatory and ablative neurotechnologies across different medical conditions. Median ratings for imperative of access to neuromodulation, for example, were highest for movement disorders (95% rating high imperative), epilepsy (63%) and pain (57%). Higher imperative ratings were strongly associated with ratings of higher likelihood of access.

Scoping Review

We also conducted a scoping review of the academic literature about global Indigenous groups’ perspectives about the brain and mind (Harding, Marra, et al., manuscript in preparation). We have found that this body of literature has a significant focus on perspectives about neurological and mental health conditions, with a smaller body of work reporting philosophical conceptualizations of the mind and brain. Holism is a common theme: many studies report perspectives of illnesses as caused by a combination of spiritual, psychological and biological factors.

flow
Simplified flow diagram of the articles screened and subsequently included in the scoping review. Image created by the author.

Working Groups

For our next step, we will bring together expertise in Indigenous health and neuroethics for a series of sequential workshops to explore meanings and values for brain wellness. While the idea of hosting these working sessions by videoconference would have been previously inconceivable, in this era of COVID-19 Indigenous communities have developed innovative approaches to uphold cultural protocols in virtual spaces (Harding et al., 2020). Applying a transformative framework, we will collaborate with Indigenous scholars, knowledge holders, and healthcare providers through consensus-seeking and collaborative writings to co-create and deliver strategic recommendations for community-based and systems-based prioritization of neurotechnology for brain health, education, and consultation.

Conclusion

Through the efforts of this ongoing, spiral, community-engaged research project, we will provide recommendations and strategic partnerships for the inclusion of ethical, practical, and cultural domains in the development and delivery of advanced neurotechnologies to mitigate disparities and realize the goal of improving brain wellness.

The work discussed in this article is being conducted at Neuroethics Canada under the leadership of Dr. Judy Illes. I thank collaborators Dr. Christopher R. Honey, Dr. Patrick J. McDonald, Dr. Malcolm King, Caterina Marra, Jacob McFarlane and Vyshu Manohara, as well as other members of the Neuroethics Canada team. This work is supported by the National Institutes of Health (J. Iles; Grant number [RF1#MH117805 01]), the North Growth Foundation (J. Iles), and the Canadian Brain Research Strategy (J. Iles).

Louise Harding is a MSc student in Population and Public Health at the University of British Columbia and a Research Assistant at Neuroethics Canada. She holds a BSc in Psychology with a minor in First Nations and Indigenous Studies from UBC.

Biopic

“Modulating the Mind” – Dr. Judy Illes at TEDx Abbotsford

Neuroethics Canada’s Dr. Judy Illes was invited to speak at the TEDx Abbotsford in November 2019.

We are pleased to share that you may now watch her presentation!

In her TEDx talk, Dr. Illes discussed how how people think about brain surgery for neurologic and psychiatric conditions, including ethical concerns about hope versus hype, rights, justice, agency, and personal privacy.

 

2019 Brain Awareness Week – Neuroethics Distinguished Lecture

Neuroethics Canada is pleased to invite you to the
 
2019 Dana Foundation Brain Awareness Week Distinguished Neuroethics Lecture
 
Smartphones:
What They Can Tell Us About Our Brains and Our Minds
Tuesday, March 12, 2019
6:30 PM – 8:00 PM
C300 Theatre, UBC Robson Square
800 Robson Street, Vancouver, BC, V6Z 3B7
(map)

 

Thomas R. Insel, MD
Co-founder and President

Mindstrong Health

 

Overview:
There are 3 billion smartphones in use today, collecting and transmitting information on an unprecedented scale. Will this new ubiquitous technology transform health care to yield better outcomes or will it become an addictive device that erodes privacy and damages mental health? This lecture begins with the history of an earlier technology, the thermometer, which over 200 years became an essential medical device. Whether smartphones will follow this history depends on the value they provide and the public’s trust in the integrity of this device. We will review some examples of how smartphones can prove helpful for people with brain disorders, including depression. And we will consider the ethical challenges to using the smartphone as a medical device. These are still early days for the smartphone but it is not too early to ask how these tools that are proving to be one of the most disruptive technologies of the modern era can be used to promote rather than threaten mental health.

 

Meet the speaker at the reception following the lecture!

Everyone is welcome! This public event is free, but tickets are required.
Get your tickets here:

Iris Coates McCall and Caitlin Courchesne receive awards at the 2018 International Neuroethics Society Annual Meeting

Neuroethics Canada congratulates Iris Coates McCall and Caitlin Courchesne for receiving the following awards at the recent 2018 International Neuroethics Society Annual Meeting held at San Diego, CA!

  • Springer Book Prize (Top Poster Presentations)
  • Outstanding Abstract Award
    Iris Coates McCall

 

  • Book Award Sponsored by Elsevier (Top Poster Presentations)
    Caitlin Courchesne

Iris Coates McCall – 2018 INS Presentation

Iris Coates McCall – 2018 INS poster

Caitlin Courchesne – 2018 INS Poster

Caitlin Courchesne, Judy Illes, and Iris Coates McCall at the 2018 INS Meeting

 

A Recipe for Success or Disaster? Exploring the Role and Contribution of Work Groups and Workshops in Neuroethics

As part of the Brain Matters! Vancouver Thematic Sessions Video Podcast, we present:

A Recipe for Success or Disaster? Exploring the Role and Contribution of Work Groups and Workshops in Neuroethics
by
Emily Bell, Associate Researcher at the Institut de Recherches Cliniques de Montréal
Michael Burgess, Chair in Biomedical Ethics, W. Maurice Young Centre for Applied Ethics, Department of Medical Genetics, University of British Columbia
Eric Racine, Director, Neuroethics, Institut de recherches cliniques de Montréal
Charles Weijer, Canada Research Chair in Bioethics, Rotman Institute of Philosophy, Western University
Cynthia Forlini (moderator), Postdoctoral Research Fellow, University of Queensland Centre for Clinical Research

This video presentation features the major points to the panels’ session on the role and contribution of work groups in neuroethics.

For more information, please visit: www.brainmattersvancouver.ca

Don’t forget to:
Subscribe at our Youtube Channel! youtube.com/user/NeuroethicsUBC
Like us on Facebook! facebook.com/NeuroethicsUBC
Follow us on Twitter! @NeuroethicsUBC | #BrainMatters

The Neuroethics of Pain Diagnostics Using Neuroimaging

As part of the Brain Matters! Vancouver Thematic Sessions Video Podcast, we present:

The Neuroethics of Pain Diagnostics Using Neuroimaging
by
Karen Davis, Head, Division of Brain, Imaging and Behaviour – Systems Neuroscience, Toronto Western Research Institute
Tor Wager, Director, Cognitive and Affective Control Laboratory, University of Colorado, Boulder
Hank Greely, Director, Center for Law and the Biosciences, Stanford Law School

This video presentation features the major points to Profs. Davis, Greely and Wager’s panel discussion on the neuroethics of pain diagnostics using neuroimaging.

For more information, please visit: www.brainmattersvancouver.ca

Don’t forget to:
Subscribe at our Youtube Channel! youtube.com/user/NeuroethicsUBC
Like us on Facebook! facebook.com/NeuroethicsUBC
Follow us on Twitter! @NeuroethicsUBC | #BrainMatters

Communicating Neuroscience: Hype and the Sources of Spin

As part of the Brain Matters! Vancouver Thematic Sessions Video Podcast, we present:

Communicating Neuroscience: Hype and the Sources of Spin
by Timothy Caulfield, Canada Research Chair in Health Law and Policy, University of Alberta

This video presentation features the major points to Prof. Caulfield’s session on how sources of hype influence the representation of science in the laboratory, research institutions and popular press.

For more information, please visit: www.brainmattersvancouver.ca

Don’t forget to:
Subscribe at our Youtube Channel! youtube.com/user/NeuroethicsUBC
Like us on Facebook! facebook.com/NeuroethicsUBC
Follow us on Twitter! @NeuroethicsUBC | #BrainMatters

Epigenetics, Brain Science and Social Responsibility


As part of the Brain Matters! Vancouver Thematic Sessions Video Podcast, we present:

Epigenetics, Brain Science and Social Responsibility
by Anthony Phillips,Scientific Director, CIHR Institute of Neurosciences, Mental Health and Addiction

This video presentation features the major points to Dr. Phillips’ talk on what epigenetics is, it’s implications to brain science and the role of social responsibility in this topic.

For more information, please visit: www.brainmattersvancouver.ca

Don’t forget to:
Subscribe at our Youtube Channel! youtube.com/user/NeuroethicsUBC
Like us on Facebook! facebook.com/NeuroethicsUBC
Follow us on Twitter! @NeuroethicsUBC | #BrainMatters

Workshop: Emerging Ethical and Legal Challenges in Chronic Neurological Conditions

med fom neuroethics.sites.olt.ubc.ca files 2014 08 NeuroEthicsCleveland.pdf
Wednesday & Thursday
October 8 & 9, 2014
Global Center for Health Innovation and Cleveland Convention Center
St. Clair Ave. NE & E 6th Street
Cleveland, OH

About the workshop:
The care of patients with serious chronic neurological conditions poses difficult ethical and legal dilemmas that extend beyond the acute care setting. This conference provides an opportunity for participants to engage in discussions regarding continuously emerging and profound legal and ethical challenges.
The topics for this conference include:

• Obligations to provide or withhold innovative or alternative therapies
• Societal and social issues in our new healthcare systems and the problem of stigma
• Nonepileptic seizures and other conversion disorders: A dialogue about emerging issues
• Public Health & Epilepsy: Considering driving, guns, and advocacy

The format of the conference will offer framework presentations by leading individuals from medicine, law, and ethics, followed by structured exploration and discussions. The paradigm of epilepsy will be used to highlight many of the ethical dilemmas, but there will be connections drawn to a variety of neurological illnesses such as multiple sclerosis, early Alzheimer’s, chronic pain, and Parkinson disease that span from pediatrics to geriatrics.

Target audience:
Neurologists, neurosurgeons, psychiatrists, lawyers, advance care nurses, physician assistants, ethicists, psychologists, health services specialists, and social workers who address practical and ethical challenges related to chronic neurological conditions.

For more details, view brochure here.
Website: www.ccfcme.org/epilepsy14
Note: There are four symposia being offered in the same week, three of which are Epilepsy related. Please do not let this confuse you. The ethics conference is held in conjunction with the others.