Hydrocephalus Canada

National Population Health Study Breaks New Ground on Spina Bifida & Hydrocephalus

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The landmark National Population Health Study of Neurological Conditions Study provides a goldmine of data and information that will be instrumental in better meeting the health and social needs of Canadians with spina bifida and hydrocephalus (sb/h) and their families in the future.

The most comprehensive study of its kind in Canada, it was conducted over four years to address the lack of information about sb/h and 12 other neurological conditions affecting more than 3.6 million Canadians. Anyone who has been impacted by sb/h will want to read the resulting report, Mapping Connections: An Understanding of Neurological Conditions in Canada, released Sept. 11, 2014, for information about the conditions pertaining to:

  • scale, scope and financial burden;
  • the often extensive and complex related health service needs;
  • important gaps in access to, and provision of, appropriate care and ways to meet and manage these needs;    
  • impacts on employment, emotional life (ie: depression) and caregivers. 
  • knowledge gaps and the need for more research around early life onset (i.e. from birth, infancy or childhood), the relationship between mental health and neurological conditions, and prevention and risk factors that are associated with brain conditions.
Mapping Connections: An Understanding of Neurological Conditions in Canada (http://www.phac-aspc.gc.ca/publicat/cd-mc/mc-ec/index-eng.php)
from the Public Health Agency of Canada

The findings are intended to inform Canadians and governing bodies about the impact of the studied conditions, including sb/h, and inform future program and policy development. “I encourage everyone in the SB&H community – parents, teenagers, young adults, caregivers, healthcare professionals, researchers, educators and others – to read the report and become familiar with the findings,” said Joan Booth, SB&H Executive Director. “It has documented where we are now and the path forward to better meet the needs of affected individuals and their families and caregivers and optimize their quality of life. The next step will be the important process of transforming these ideas and recommendations into action.”

SB&H will be involved in this process as a member of Neurological Health Charities Canada (NHCC) which partnered with the Government of Canada to develop the study.

Many members of the SB&H community contributed to the study by sharing their personal experiences – among approximately 177,000 Canadians who did so. In addition, the study involved 130 researchers from 30 academic and other institutions across Canada, three national surveys, 13 pan-Canadian research projects, the expansion of ongoing surveillance to include certain conditions and the development of a micro-simulation model to estimate the impacts of neurological conditions over the next 20 years. 

The study has significantly increased the momentum for action within the neurological community, opened doors for future collaborations and initiatives and established neurological conditions as a priority health issue for Canada.

Key Study Findings
  • Unemployment was 5X times higher than in the general population (12X ties higher with migraine removed from analysis)
  • Caregiver distress was more than twice as high
  • 35% of adults reported that their family had experienced a financial crisis in the previous year, and close to one quarter of parents of children with a condition reported financial issues.

*Based on survey respondents with spina bifida, hydrocephalus and 12 other neurological conditions, conditions of the central and peripheral nervous system.

More Information

NHCC Study Postcard (PDF)
NHCC Study Brochure (PDF)
NHCC Website: Background, Major Findings, etc.