The Canadian Survey on Disability: An Underutilized Source for Measuring Burden of Illness
February 18, 2021

The Canadian Survey on Disability (CSD) is a repeated cross-sectional survey of Canadians 15 years of age and older living with disability.1 Conducted by Statistics Canada, CSD participants are recruited from individuals who reported having a long-term health related condition or difficulty on the Long-Form Census. The most recent version of the CSD (having taken place in 2017) recruited almost 50,000 participants, making it one of the largest surveys of people with disability in the world.2

With respect to the questionnaire, CSD respondents are asked to self-report the health conditions that most impact their daily lives to a maximum of two, which Statistics Canada analysts then translate into ICD-10 codes. This allows researchers to identify individuals with specific health conditions. In addition to identifying specific health conditions, CSD respondents’ data can be stratified by age; jurisdiction at the national, provincial, and municipal levels; and is linked to respondents’ Canadian Census data. This allows for a wide range of additional variables that capture respondent’s employment status, living status, educational attainment, income, and other socioeconomic variables. Understanding how health conditions impact patients’ socioeconomic outcomes is an important component of understanding disease burden, often not captured in administrative health databases.

Perhaps the CSD’s most unique component is that it captures information on respondents’ use of products and services such as assistive devices, over the counter medications, and respondents’ ability to afford prescribed medications. This information makes the CSD a useful source of information on patients’ out of pocket expenditures. Out-of-pocket expenditures are an important component of disease burden that often goes unaccounted for in administrative health databases. Furthermore, the CSD contains a sample of respondents taken from the general public, without disability, to facilitate comparisons of outcomes between individuals with versus without a specific condition. The CSD also contains information on respondents’ use of healthcare services from both private and public sources such as physician visits and inpatient stays.

It is important to note that there are limitations to the CSD. For instance, the CSD does not capture data for people younger than 15; living on first nations reserves; living in collective dwellings such as seniors facilities, assisted living facilities, correctional facilities, hospitals, military bases; or for the homeless. As a result, the survey likely misses a portion of people with various conditions. Furthermore, the CSD requires individuals to self-report their conditions meaning there exists the potential for misspecification or the underreporting of health conditions.

Data from the CSD is available through Statistics Canada’s Research Data Center (RDC) Network. The RDC network is a national group of data centers through which analysts can access data not publicly available. Analysts at Medlior are experienced working with the RDC network. Recruitment for the next CSD will follow the 2021 Canadian Census scheduled for summer of 2021, Medlior would be happy to assist you with any questions you might have regarding this underutilized data source.

References

1 Statistics Canada. Canadian Survey on Disability (CSD). 2018. Available from:   https://www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey&SDDS=3251

2 Berrigan, P., Scott, C. W., & Zwicker, J. D. (2020). Employment, Education, and Income for Canadians with Developmental Disability: Analysis from the 2017 Canadian Survey on Disability. Journal of autism and developmental disorders, 1-13.