On Sept. 11, the results of a first-of-its-kind study examining the impact neurological conditions like epilepsy have on affected people, their families and the greater health-care system, were released.
According to the report, more than 3.6 million Canadians are affected by neurological conditions, including 50 per cent of those living in long-term care homes or receiving home care. The study also found the unemployment rate of people with neurological conditions, excluding migraines, to be 12 times higher than that of the general population.
Other key findings from the report include:
– Epilepsy was one of the 14 priority neurological conditions studied
– People affected by neurological conditions are twice as likely to suffer from depression
– People with these conditions use more health-care services than those living with other chronic conditions
– Thirty-five per cent of adults with neurological conditions report experiencing a financial crisis in the past year
– The number of Canadians hospitalized with traumatic brain injury is expected to increase 28 per cent
– Epilepsy is associated with significant direct (health care) and indirect economic costs
– By 2031, the indirect economic costs due to premature death and disability for working-age people with epilepsy is projected to be $2.8 billion
– The study identified areas for more research, including the impact of neurological conditions on children
– Individuals with different neurological conditions share many of the same impacts, such as memory impairments and thinking/problem-solving difficulties
– As a result of this study, the Canadian Chronic Disease Surveillance System has been expanded to track neurological conditions including epilepsy
Voices of Epilepsy recently spoke with Dr. Nathalie Jetté, who was a primary investigator as well as a resource for other researchers who included epilepsy in their projects researchers working on this study:
Voices of Epilepsy: What did you learn about epilepsy and other neurological disorders as a result of having been involved in this study?
Dr. Nathalie Jetté: We gained significant knowledge about the worldwide epidemiology of neurological
conditions and have developed a strong foundation — both methodological and collaborative — to guide neuro-epidemiology and health-services research in neurology for years to come. However, I also learned that although there is a lot of excellent neurological research being carried out in Canada, our knowledge of the epidemiology of these conditions and its true impact is still limited, particularly in Canada. In general, most of the data we have to help us understand how many Canadians are affected and how they are affected by these conditions is based on self-report or administrative databases that can be very helpful but lack the detailed clinical information that can truly help us understand the impact of these conditions on the patients, their families and society. There are very few longitudinal cohort studies where patients are followed over time which have been carried out in Canada, and certainly none for those with epilepsy.
The study confirmed that those with epilepsy and other neurological conditions are greatly affected not only by their disease specific symptoms, but also by many other factors including the additional impact of co-existing conditions — for example, depression — and psychosocial issues (such as) stigma, unemployment, etc.
VoE: What were the main findings from your work related to epilepsy? What do you feel is the most significant finding for people living with epilepsy and their families from your research?
NJ: I think the most significant finding from our research is that it is possible to develop a national surveillance program for epilepsy in Canada using existing data sources to better understand the scope of this condition and how much resources are used to care for those with epilepsy. This will help us guide future health-care provision in Canada for persons with epilepsy. This is something that we have had the opportunity to work on with the Public Health Agency of Canada’s Canadian Chronic Disease Surveillance System Neurological Condition Committee. They will soon be launching a surveillance program for epilepsy. This program will help us fill many knowledge gaps about the epidemiology of epilepsy in Canada.
VoE: What future outcomes are you most excited about?
NJ: I think our project evaluator, Dr. Ardene Vollman, addressed this best in the evaluation report she prepared about our study: “The knowledge gained from this project (methods, tools, definitions, terminology, and recommendations) has the potential to guide and co-ordinate neuro-epidemiology for years to come as our project evaluator commented on. The impact of systematic reviews (and the findings from other projects we were involved in) on knowledge translation into clinical practice presents substantial opportunity for improvements in patient care. The impact on student development and training is potentially considerable. There is extensive potential that the networks developed will flourish over time to become a world- renowned research alliance that contributes significantly to the international neurological health scene, both epidemiologically and clinically.”
VoE: People who live with neurological conditions, as well as patient advocacy groups, played an important role in this study from beginning stages to the drafting of the final report. What were the benefits of the collaboration between patients and their families, patient groups, researchers and government?
NJ: The benefits included making sure that the study was relevant to the key stakeholders, particularly patients and their families and patient groups. The study could not have happened without the support of these patients, families and patient advocacy groups who were the driving force behind this whole initiative, largely through their efforts and through the creation of Neurological Health Charities Canada (NHCC). Government was the funding arm of the study and the incredible leadership of the Public Health Agency of Canada and the NHCC throughout this major initiative was instrumental to its success. Of course, this could not have happened without all the researchers who led the research activities. Overall, great research collaborations have been created that I suspect will last a very long time and play a strong role in improving care for those with epilepsy and other neurological conditions nationally and abroad.
To learn more, visit the Neurological Health Charities Canada (NHCC) website.
Writer: Deron Hamel
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