In conclusion: Mapping Connections: An understanding of neurological conditions in Canada

This Study supported the collaboration of experts, researchers, health professionals, and stakeholders in the shared objective of a better understanding of the burden of neurological conditions in Canada. As a result, considerable data and information were produced that speak to the diverse impacts that neurological conditions have on Canadians living with these conditions, as well as on their families, communities, and the health care system. It was found that some Canadians diagnosed with a condition affecting their brain, spinal cord, or peripheral nervous system were able to manage their condition and were living in the community with or without support. Others had a neurological condition that was so disabling that they required continuing care or lived in a long-term care facility. Despite the range of impacts caused by these neurological conditions, many commonalities were also found, highlighting the validity of examining such a breadth of conditions under one Study.

The Study is a wonderful step forward – a multilayered initiative to gain a better understanding for the future of patients and the health care system.

~ Individual living with a neurological condition

Understanding the impacts of these neurological conditions on Canadians in turn supported an understanding of the often extensive and complex health needs of those affected. The Study pointed to important gaps in the access to, and provision of, appropriate care for those living with a neurological condition, particularly for those with the most disabling conditions. Encouragingly, the Study also identified better ways to meet and manage these health needs.

It was recognized that an improved appreciation of the overall scope of neurological conditions in Canada was necessary to better meet the needs of those living with these conditions. Study projects used a variety of epidemiological methods to produce new estimates of the prevalence and incidence of neurological conditions among Canadians. Some data sources were better equipped to identify certain neurological conditions than others. These findings have provided substantial evidence to support the future direction of national surveillance of neurological conditions in Canada.

In addition, specific projects of the Study gathered evidence on factors associated with the onset of neurological conditions. As work continues to strengthen this evidence base, Canadians will benefit from these insights on how to support their neurological health.

This Study of neurological conditions was the largest of its kind ever to be undertaken in Canada and was successful in many respects. However, certain limitations should be noted. A decision was made at the onset of the Study to focus on the 14 neurological conditions that were most prevalent in Canada. Even so, due to small sample sizes in some projects, insufficient reportable data were obtained pertaining to the impacts or extent of the less common neurological conditions such as ALS or Huntington’s disease. Also, not all the data and information obtained from the Study projects were pan-Canadian, resulting in the need for caution when trying to extrapolate these findings to Canada as a whole or to other provinces and territories. Gaps were identified in each chapter that emphasized issues that were either faced by Study projects or identified during the consolidation of Study findings. In addition to these gaps, this Study was not able to address all topics of importance to those living with or affected by a neurological condition, such as sexual health or end of life care. Future studies may be able to address these and other limitations identified by the Study.

This report endeavoured to tell the story of Canadians living with a neurological condition – its range of impacts, gaps and successes in health service provision, the scope of the burden at a national level, and potential targets for prevention at the individual and population levels. This report, however, only highlights a few key findings distilled from the depth of information amassed during the administration of the Study, and serves as a small window into the bigger world explored in this process. For more information on the findings from the Study, its 13 projects, three national surveys, seven microsimulation models, or the hundreds of researchers, committee members, and other individuals involved, we encourage you to visit the NHCC and Agency websites.

Sincere appreciation and admiration is owed to all who played a role in this Study. Those who have eagerly waited for this information are to be thanked for their patience and support. Although this report signals an end to the Study itself, it will continue to catalyze new and important work, including further publications based on findings from Study projects, the establishment of ongoing surveillance at the national level, and the development of registries, protocols, and toolkits. The Study also helped to increase general awareness of neurological conditions among public health care program and policy makers. This work has provided, and will continue to provide, evidence for those seeking to address neurological conditions in Canada.

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