Survey of Neurological Conditions in Institutions in Canada (SNCIC)

Detailed information for 2011 - 2012

Status:

Inactive

Frequency:

One Time

Record number:

5187

This survey collects data on the prevalence of several neurological conditions in long-term care facilities.

Data release - February 13, 2013

Description

This first-ever national survey collects data on the number of persons living in long-term care facilities who have been diagnosed with selected neurological conditions. The questionnaire also asks about the number of persons with at least one of the conditions. The data are gathered by age group and sex of residents in long-term care facilities.

The following neurological conditions are listed in the questionnaire:

Multiple sclerosis
Epilepsy
Cerebral palsy
Spina bifida
Hydrocephalus
Muscular dystrophy
Dystonia
Tourette's syndrome
Parkinson's disease
Amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease)
Huntington's disease
Stroke
Traumatic brain injury
Traumatic spinal cord injury
Brain tumour or spinal cord tumour
Alzheimer's disease or other dementia

The survey will provide information about the prevalence of these neurological conditions in long term care facilities.

The survey, sponsored by the Public Health Agency of Canada (PHAC), is part of a large, comprehensive initiative called the National Population Health Study of Neurological Conditions. Survey results will be used to assess what resources are needed to provide care to people with neurological conditions.

Subjects

  • Diseases and health conditions
  • Health

Data sources and methodology

Target population

The target population of the Survey of Neurological Conditions in Institutions in Canada (SNCIC) is composed of long-term residential care facilities which are approved, funded or licensed by provincial/territorial departments of health and/or social services. The facility must provide 24 hour care. Types of residential care facilities included in the survey are homes for the aged, persons with physical disabilities, persons who are developmentally delayed, persons with psychiatric disabilities, and emotionally disturbed children. Excluded from the survey are drug and alcohol rehabilitation centres, temporary shelters for the homeless, independent living facilities and acute care hospitals. Long-term care facilities that fall under the umbrella of a hospital are included in the survey provided that they are a separate entity. Respite and rehabilitation beds are excluded.

Instrument design

The questionnaire was developed by Statistics Canada in collaboration with the Public Health Agency of Canada and their neurological experts group. Two qualitative tests were conducted as one-on-one, in depth interviews with administrators or directors of care of residential facilities of different sizes and types. The testing sought feedback from respondents on their overall reactions to the questionnaire and assessed respondents' ability and willingness to provide answers to survey questions. The scope of the survey and the wording of the questionnaire were modified based on results of the tests.

Sampling

This survey is a census with a cross-sectional design.

In the province of Quebec some institutions are covered through a sample survey.

To build the survey frame, two sources were used in all provinces and territories, the 2010 Residential Care Facility (RCF) Survey mailing list (see IMDB record 3210), supplemented with in-scope units from the Canadian Healthcare Association's (CHA) Guide to Canadian Healthcare Facilities. Overlap between the two lists was first identified. Then the remaining CHA units were researched to eliminate obvious out-of-scope facilities. Because the RCF was conducted differently in Quebec, the coverage was improved in this province by sampling units from the Business Register (BR, at the location level, under code 623 of the North American Industry Classification System (NAICS)), after comparison with the RCF and CHA lists.

All units from the RCF list that had some missing information, as well as all remaining non-RCF units were sent for a pre-contact. The pre-contact was done is September 2011. The goal was to confirm that the institutions were in-scope and to update all contact information.

Data were collected from all RCF and CHA units that remained in-scope after the pre-contact, as well as all sampled in-scope units from the BR in Quebec.

Data sources

Data collection for this reference period: 2011-10-04 to 2012-02-29

Responding to this survey is voluntary.

Data are collected directly from survey respondents.

The survey questionnaire and an introductory letter were mailed to the facilities. Once returned to Statistics Canada's head office, the completed questionnaires were imaged and data captured. Follow up calls were made and reminder cards were sent to encourage completion of the survey. In case of missing or inconsistent answers, calls were made to obtain the required information.

View the Questionnaire(s) and reporting guide(s) .

Error detection

Several edits were performed at Head Office during the data processing step. The edits identified duplicate records, institutions that reported no residents, errors in the reporting date, and consistency errors within and between the survey tables. Records that failed the edits were examined manually and corrected where possible. Duplicate records were removed from the data file. If the record could not be corrected through this examination or through the follow-up calls, it was flagged for imputation. The survey comments were also read for all facilities and changes made as required.

For cases where a follow-up call was made, some editing of the data was performed at the time of the interview by the computer-assisted interviewing (CAI) application. It was not possible for interviewers to enter out-of-range values and flow errors were controlled through programmed skip patterns. For example, CAI ensures that questions that do not apply to a respondent are not asked. In response to some types of inconsistent or unusual reporting, warning messages were invoked at the time of the follow-up interview.

Imputation

Missing or inconsistent information from table B (number of males diagnosed with each of the neurological conditions of interest by age group), table C (number of females diagnosed with each of the neurological conditions of interest by age group) and table D (number of residents with at least one of the neurological conditions by age group and sex) were imputed. Tables B and C were first imputed by using the rate by age and sex for each neurological condition, as obtained from completed questionnaires that did not fail any edits related to those tables (complete and clean questionnaires). Table D was then imputed by using the numbers from tables B and C combined with the average number of neurological conditions by resident who reported at least one condition. Again, this average was obtained from the complete and clean questionnaires.

Estimation

The "weight" is defined as the number of institutions that a participating facility represents in the target population, including itself. The sum of the weights of all institutions in the sample should equal the size of the target population. The principle behind estimation consists of using weights to assess the prevalence of a characteristic by extrapolating from the sample to the target population. For example, the number of residents suffering from multiple sclerosis is estimated by multiplying the weight of a facility by the number of residents in this facility suffering from multiple sclerosis and adding these results over all institutions in the sample.

Since a census of all members of the SNCIC target population was attempted, each institution had an initial weight of one, with the exception of units sampled from the BR in Quebec. Once selected, institutions may fail to respond to the survey for any number of reasons (refusal, inability, unavailability during attempts to contact them, etc.). When more up-to-date information from the SNCIC is considered, an institution may no longer belong to the target population, for example, because it is no longer in operation. In order to ensure that the SNCIC respondents truly represent the target population, initial weights were adjusted to shift the weight of non-respondents to respondents. Institutions that were no longer part of the target population were removed from the file.

Quality evaluation

To ensure the survey met its objectives (see "Description"), the SNCIC was developed based on a multi-stage consultation process. A working group comprised of authorities from the Public Health Agency of Canada, Statistics Canada, and the Neurological Health Charities of Canada determined the concepts and focus.

Throughout the collection process, control and monitoring measures were put in place and corrective action was taken to minimize non-sampling errors. These measures included response rate evaluation, reported and non-reported data evaluation, improved collection tools for interviewers and others.

Disclosure control

Statistics Canada is prohibited by law from releasing any information it collects that could identify any person, business, or organization, unless consent has been given by the respondent or as permitted by the Statistics Act. Various confidentiality rules are applied to all data that are released or published to prevent the publication or disclosure of any information deemed confidential. If necessary, data are suppressed to prevent direct or residual disclosure of identifiable data.

In order to prevent any data disclosure, confidentiality analysis is done using the Statistics Canada Generalized Disclosure Control System (G-Confid). G-Confid is used for primary suppression (direct disclosure) as well as for secondary suppression (residual disclosure). Direct disclosure occurs when the value in a tabulation cell is composed of or dominated by few enterprises while residual disclosure occurs when confidential information can be derived indirectly by piecing together information from different sources or data series.

Revisions and seasonal adjustment

This methodology does not apply to this survey.

Data accuracy

A total of 7,210 institutions were contacted for the SNCIC, of which 530 were determined to be out-of-scope. In total, 4,245 valid completed questionnaires were obtained for a response rate of 63.5%.

Sampling errors

Since it is an unavoidable fact that estimates from a sample survey are subject to sampling error, sound statistical practice calls for researchers to provide users with some indication of the magnitude of this sampling error. In the case of the SNCIC, the sampling error is very limited, since all institutions in the target population were contacted, with the exception of those coming from the BR in Quebec.

Non-sampling errors

With a large number of observations, randomly occurring errors will have little effect on estimates derived from the survey. However, errors occurring systematically will contribute to biases in the survey estimates. Considerable time and effort was devoted to reducing non-sampling errors in the SNCIC. Quality assurance measures were implemented at each step of data collection and processing to monitor the quality of the data.

A major source of non-sampling errors in surveys is the effect of non-response on the survey results. The extent of non-response varies from partial non-response (failure to answer one or a few questions) to total non-response. Partial non-response to the SNCIC was minimal; once the questionnaire was started, it tended to be completed with very little non-response. Total non response occurred either because the contact person from an institution refused to participate in the survey or because the interviewer was unable to contact the institution.

Total non-response was handled by adjusting the weights of the institutions that responded to the survey to compensate for those that did not respond. In order to do this, non-response adjustment groups were created and the weights of the non-respondents were redistributed to the respondents within a group. This process assumes that non-response occurred at random within a group, which is similar to assuming that the respondents in a non-response adjustment group represented a simple random sample of all institutions in the group. This assumption served as the basis to calculate a variance due to total non-response which, combined with the sampling variance for units sampled from the BR in Quebec, could then be used to produce a margin of error for each survey estimate.

Report a problem on this page

Is something not working? Is there information outdated? Can't find what you're looking for?

Please contact us and let us know how we can help you.

Privacy notice

Date modified: