The data
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Data Source
This study was based on the Neurological Conditions Prevalence File, which was derived from the 2010/2011 Canadian Community Health Survey (CCHS) – Annual Component , the 2011 Survey of Living with Neurological Conditions in Canada (SLNCC), and the 2011/2012 Survey of Neurological Conditions in Institutions in Canada (SNCIC). Detailed documentation for these surveys is available at www.statcan.gc.ca.
The CCHS is a cross-sectional survey that collects health information about people aged 12 or older living in private households. The sampling frame excludes full-time members of the Canadian Forces, residents of reserves and other Aboriginal settlements in the provinces and in some remote areas, and the institutionalized population. The Neurological Conditions module of the CCHS collected information on all household members, thereby increasing sample size and providing data for the population younger than age 12. This yielded a final sample size of 285,971 in the Neurological Conditions Prevalence File. The response rate was 70.6%.
The cross-sectional SLNCC explored issues related to neurological conditions, including diagnosis, medication use, and impact. It targeted Canadians aged 15 or older in private households. In addition to groups excluded from the CCHS, the SLNCC excluded residents of the three territories. The sample consisted of 4,569 respondents. The response rate was 81.6%. Ages of symptom onset and of diagnosis were based on a sample of 356 people with Parkinson’s, representing an estimated 47,500 people. Analysis of the impact of Parkinson’s was based on a sample of 274 respondents with Parkinson’s disease but none of the other neurological conditions covered by the survey; they represented an estimated 35,900 Canadians.
The SNCIC was a census with a cross-sectional design. It collected information about the numbers of people in long-term care facilities who had been diagnosed with selected neurological conditions, including Parkinson’s disease. Long-term residential care facilities with four beds or more, and which were approved, funded or licensed by provincial/territorial departments of health and/or social services, were included in the survey.Note 2 The SNCIC sample consisted of 4,245 institutions. The response rate was 63.5%.
Definitions
Respondents were asked about selected chronic neurological conditions (including Parkinson’s disease) that had lasted or were expected to last six months or more and that had been diagnosed by a health professional.
Respondents with neurological conditions were asked four questions about social interactions. Those who responded “always,” “often” or “sometimes” versus “rarely” or “never” were considered to have interactions that had been affected by the condition.
Respondents were asked about assistance they received in the past 12 months at home, work or school because of their neurological condition. Types of assistance from formal and informal sources were asked separately, but combined for this analysis.
The caregiver was the family member, friend or neighbour who had dedicated the most time and resources to providing informal assistance in the past 12 months. Spouse caregivers referred to married, common-law, same sex partner and ex-spouse relationships; other family members (including in-laws), friends and neighbours comprised other caregivers. Caregivers were classified as currently working if they had worked at a job or been absent from work in the week before the interview. Respondents reported if their caregiver worked full or part time. The frequency of care from the main caregiver was classified as daily or less than daily.
Weighted frequencies, cross-tabulations and means were used to examine the prevalence of Parkinson’s disease and its impact. To account for survey design effects, in this analysis, standard errors and coefficients of variation were estimated using the bootstrap technique.Note 3,Note 4
Limitations
Neurological conditions were self-reported by individuals (household) or by proxy respondents (institutions) and not verified by any other source. For people in institutions, only prevalence data were available; therefore, most of the analyses concern the household population and do not represent residents of health care institutions.
CCHS respondents were asked if they, or someone in their household, had been diagnosed with selected neurological conditions. People reported to have a neurological condition were selected to participate in the SLNCC and were again asked about all of the neurological conditions of interest. There were 72 respondents who were reported to have Parkinson’s based on the CCHS, but not on the SLNCC. In addition, 17 respondents did not have Parkinson’s based on the CCHS, but did on the SLNCC. Details are available elsewhere.Note 5
Of those with Parkinson’s, 23% had at least one other neurological condition that was included on the survey. The average age of those with Parkinson’s only (73.7 years) was not significantly different from that of people with Parkinson’s and at least one other neurological condition (72.5 years). SLNCC respondents answered questions about all their neurological conditions, because it would have been difficult for people with multiple conditions to isolate the impact of one from that of others. For this study, the social, financial and physical impacts and caregiver characteristics were examined for people with Parkinson’s, but none of the other selected neurological conditions. Although this excludes people with more than one condition (thereby yielding what might be a slightly healthier sub-population), the estimates were similar when those with more than one neurological condition were included. The strength of examining only those with Parkinson’s is that impacts can be attributed directly to Parkinson’s, not to another condition.
Questions about medication use specify “prescribed” medications, which can include non-prescription medications if they were prescribed by a health professional. However, when asked about out-of-pocket expenses, respondents were instructed to report on both prescription and non-prescription medications. Thus, the types of medications may differ when respondents report on “use” versus “expenses.”
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