Executive summary: Mapping Connections: An understanding of neurological conditions in Canada

Neurological conditions (diseases, disorders, and injuries) can directly affect Canadians of all ages. Such conditions can be severe or mild, progressive or non-progressive, or uncontrolled or controlled. As these conditions may lead to symptoms and functional deficits that are often chronic in nature, they can have profound impacts on the life and well-being of affected individuals, their families, caregivers, and communities.

Because the prevalence and incidence of some of the most common neurological conditions tend to increase with age, both the number of individuals facing these challenges and the cost of associated care are expected to rise as the Canadian population ages. Worldwide, the focus on neurological conditions, the aging population, and the recognition of their impacts is increasing. In this context, the National Population Health Study of Neurological Conditions (the 'Study') was initiated, with the long-term goal of reducing the burden of neurological conditions in Canada through an increase in understanding of these conditions in a Canadian context. The table below presents the Study partners, components, focus areas, and original 14 neurological conditions selected for inclusion. In addition to these selected neurological conditions, the Study also subsequently provided some coverage of migraine, spinal cord tumour, Rett syndrome, and stroke.

An overview of the National Population Health Study of Neurological Conditions

Partners	Components	Focus areas	Neurological conditions
Neurological Health Charities Canada	Federal investment of $15 million (2009-2013):	Impacts on affected individuals, their families, caregivers, and communities	Alzheimer's disease and other dementias
			Amyotrophic lateral sclerosisNote de bas de page *
			Brain tumour
Public Health Agency of Canada	13 research projects	Use of health services, gaps in services, and recommended improvements	Cerebral palsy
			Dystonia
			Epilepsy
Health Canada	3 national surveys	Scope in Canada (prevalence, incidence, and comorbidities)	Huntington's disease
			Hydrocephalus
			Multiple sclerosis
			Muscular dystrophy
Canadian Institutes of Health Research	7 microsimulation models	Risk factors for the development and progression of these conditions	Neurotrauma (traumatic brain injuries and spinal cord injuries)
			Parkinson's disease
			Spina bifida
			Tourette syndrome
Note de bas de page 1 NOTES: Amyotrophic lateral sclerosis is also known as ALS or Lou Gehrig's disease. Retour à la référence de la note de bas de page *

Impacts of neurological conditions

The first chapter of this report presents findings related to the impact of neurological conditions on individuals, their families, and caregivers. Diseases, disorders, and injuries of the brain, spinal cord, and peripheral nervous system can have varying effects both within and across conditions. Nonetheless, individuals living with a neurological condition share many of the same functional impacts and needs.

The impacts of neurological conditions can…

• include a range of functional impairments that affect mobility, dexterity, skin and joint sensation, behaviour, bladder or bowel function, communication or speech and language, perception, cognition, consciousness, and emotion;
• result in pain and discomfort;
• negatively affect mental health, quality of life, educational opportunities, the ability to work and participate in activities, and financial security; and
• lead to feelings of stigmatization.

Neurological conditions can affect…

• men and women differently, with certain neurological conditions being more prevalent in men and others more prevalent in women;
• children at birth or at a young age, or adults at an older age, altering their life paths in different ways;
• families of children living with a neurological condition, by causing strain on family members and giving rise to financial issues;
• the daily lives of First Nations and Métis individuals in terms of physical, emotional, cognitive or mental health, and spirituality; and
• informal caregivers, especially if they are caring for an individual exhibiting cognitive impairment or behavioural issues.

Health services for neurological conditions

A range of health services is necessary for addressing the needs of individuals living with a neurological condition, and those of their families and caregivers. The second chapter presents findings related to the use of health services, gaps in these services, and recommended improvements along the continuum of care. Canadians living with a neurological condition usually use more health care services than those without a neurological condition or even those with other chronic conditions, whether they are living in the community or in health care facilities, receiving alternate level of care, or obtaining the services of physicians and other health care professionals.

Canadians living with a neurological condition often…

• use more universally insured health care services than Canadians with most other chronic health conditions, with more hospital days, physician visits, prescriptions, and days in residential care;
• have more alternative level of care days in hospital while awaiting placement for further care;
• use more formal and informal assistance with personal care, housework, or general help with activities than their counterparts without a neurological condition;
• need formal emotional support because of their condition;
• have health care costs that are significantly higher compared to individuals without a diagnosis of those particular conditions; and
• have considerable personal out-of-pocket costs for prescribed medications, despite the fact that most have a drug insurance plan.

Certain barriers exist in health service provision, such as…

• lack of information on, and services for, continuing education or returning to school, employment, family and caregiver support, housing, and transportation;
• general difficulty in accessing specialist care, such as services from a neurologist or neuropsychiatrist, particularly in rural or remote areas;
• limited availability of specialized services for individuals with less common conditions;
• exclusion criteria that limit access to certain services or facilities based on psychiatric diagnoses, severe behavioural disorders, substance abuse, medical instability, or presence of comorbidities;
• difficulty in accessing health care for children, whether from a general practitioner, pediatrician, or specialist; and
• difficulty in obtaining services when a condition is long-standing or combined with a cognitive impairment.

Services could potentially be enhanced by targeting…

• improvements in knowledge of neurological conditions among health care providers;
• multidisciplinary care and supporting transitions between settings;
• social determinants of health such as education, employment, housing, and transportation;
• appropriate placement of individuals through the use of assessment tools to define care needs of those living with chronic neurological conditions;
• better monitoring and prescription of condition-specific medications by primary care physicians;
• the development of clinical profiles of individuals with a neurological condition in different care settings (including home care programs), using a system like the one developed by the interRAI Project; and
• challenges faced by First Nations and Métis individuals, including ambiguity about the level of government responsible for care provision and the need for better cultural competence among care providers.

Scope (prevalence and incidence) of neurological conditions

The third chapter presents findings related to the epidemiology of neurological conditions in Canada. Various sources and methods for estimating their prevalence and incidence were used – systematic reviews and meta-analyses, health administrative data, electronic medical records, surveys, and microsimulation models – each with strengths and limitations. Assessing the reliability of prevalence and incidence estimates from these different sources provided important information which could enhance the surveillance of neurological conditions in Canada. Also, the unequal distribution of neurological conditions between sexes and across age groups reinforces the need to consider prevalence and incidence patterns when planning health services and programs.

Estimating the prevalence and incidence of neurological conditions can be accomplished using a variety of data sources, such as…

• systematic reviews, that examine the existing literature for sound evidence on prevalence and incidence estimates as well as on data coding and sources;
• health administrative databases;
• surveys, for population-based estimates of more prevalent conditions (but not for less common conditions);
• electronic medical records, for prevalence estimates and further context based on sociodemographic characteristics;
• mail-in questionnaires, to capture cases of neurological conditions in long-term care facilities; and
• registries and condition-specific surveillance programs, for rare conditions.

Surveillance of neurological conditions can be accomplished through multiple strategies, including the use of…

• the Canadian Chronic Disease Surveillance System, which is a collaborative network of provincial and territorial surveillance systems led by the Public Health Agency of Canada to collect data on chronic conditions (including neurological conditions);
• electronic medical records, building on existing networks such as the Canadian Primary Care Sentinel Surveillance Network; and
• comprehensive guidelines and a toolkit, like those produced by the Registry Guidelines Project for the development, implementation, and maintenance of registries of neurological conditions in Canada.

Risk factors for neurological conditions

The final chapter touches upon a component of the Study which sought to identify insights into the biological, lifestyle, socioeconomic, environmental, and psychosocial factors that are potentially associated with the development of neurological conditions. Associations that could be modified by available interventions are particularly relevant, as they offer the potential for the prevention or mitigation of neurological conditions.

Potential modifiable risk factors for the onset of neurological conditions were highlighted, such as…

• cardiovascular risk factors, including smoking and diabetes, which are not only associated with the development of stroke, but also with Alzheimer's disease and other dementias;
• brain injury, a neurological condition in itself, which is also identified as a risk factor for Alzheimer's disease and other dementias in men, and for epilepsy in both sexes;
• falls in the aging population, which would help reduce the risks associated with traumatic brain and spinal cord injuries;
• vitamin D deficiency, which is associated with multiple sclerosis;
• exposure to pesticides, which is associated with Alzheimer's disease and other dementias, ALS, brain tumours, and Parkinson's disease; and
• complications of pregnancy and delivery, which are associated with several neurological conditions in children.

It should be recognized that…

• the presence of a factor associated with a condition does not necessarily imply that it is the cause of the condition, and conversely, its absence would not guarantee that an individual would not develop the condition;
• identified risk factors may be associated with only a small percentage of the cases of a specific neurological condition, or may only apply to specific populations;
• there is a need to assess both the clinical and public health significance of risk factors; and
• existing data sources, such as those of the Canadian Primary Care Sentinel Surveillance Network, interRAI Project, or Cerebral Palsy Registry Project, could be developed further to yield insights into the lifestyle, socioeconomic, and environmental factors that may increase the risk for developing specific neurological conditions.

Looking ahead: 2011 to 2031

To estimate health outcomes and costs over the next 20 years for seven of the neurological conditions targeted by the Study,^{Note de bas de page 1} microsimulation models were developed by the Public Health Agency of Canada with Statistics Canada. The models accounted for future changes in the Canadian population from births, immigration, emigration, and aging, but not for changes in risk factors or in the prevention, diagnosis, treatment, or management of neurological conditions.

Based on these status quo assumptions, projections from the seven microsimulation models indicate that by 2031…

• as a consequence of the increased prevalence of the selected neurological conditions, an increased number of Canadians will live with severe disability (as defined by the Health Utilities Index-Mark 3, HUI-3), require care provided by informal caregivers, and die with a neurological condition;
• the indirect economic costs due to working-age disability and premature death related to neurological conditions will increase;
• total annual health sector costs will increase modestly for five of the seven modelled neurological conditions, but will be twice as high for Canadians age 40 years and older living with Alzheimer's disease and other dementias and Parkinson's disease/parkinsonism;
• the most prevalent of the seven neurological conditions will continue to be traumatic brain injury, Alzheimer's disease and other dementias, and epilepsy;
• the numbers of new cases of cerebral palsy, epilepsy, multiple sclerosis, and spinal cord injury will rise with the growth of the population, the numbers of new cases of Alzheimer's disease and other dementias and Parkinson's disease/parkinsonism will double, and the number of new hospitalizations with brain injury will increase by 28%; and
• the number of Canadians age 65 years and older living with each of the modelled neurological conditions will more than double.

Knowledge gaps

While generating new information related to the focus areas of this Study, gaps were also identified. Generally, data on certain specific populations, such as First Nations, Inuit, and Métis communities, children, Canadians typically excluded from national surveys, or those with less prevalent neurological conditions, remain scarce. Data are still lacking or deficient regarding the distribution, quality, and costs of health services for Canadians living with a neurological condition specific to the various regions and jurisdictions of Canada. Currently, clear and comprehensive data on risk factors for the onset and progression of neurological conditions are not yet available, but steps have been initiated to facilitate access to these data in the future. Provided the availability of epidemiological and intervention data, the introduction of alternative scenarios to status quo assumptions in microsimulation models would offer the opportunity to understand the potential effects of better prevention strategies, earlier interventions, new treatments, and rehabilitation approaches on the diverse impacts of neurological conditions. Identifying these gaps is a valuable step in guiding future research endeavours.

In conclusion

This report describes key findings emerging from the Study, identified during a comprehensive and inclusive synthesis process. Overall, the Study offers extensive information on the diverse and often debilitating impacts of neurological conditions, but also presents commonalities in experiences shared by Canadians living with or affected by these conditions. This strengthened the understanding of the often extensive and complex health service needs of those affected by neurological conditions, and the identification of important gaps in access to, and provision of, appropriate care. The Study identified ways to meet and manage these needs. Among the positive outcomes of the Study, several Study projects produced new estimates of the prevalence and incidence of neurological conditions in Canada, and provided substantial evidence to support national surveillance of these conditions. In addition, specific projects have gathered preliminary evidence on factors associated with the onset of some of these conditions.

This Study of neurological conditions was the largest of its kind ever to be undertaken in Canada, and the collaborative effort of all who played a role in its achievements should be recognized. The new evidence generated by the Study, combined with a general increase in awareness, may support Neurological Health Charities Canada, governments, and other stakeholders in their work to reduce the impact and burden of neurological conditions in Canada.