General Practitioner Preferences in Managing Care of Multiple Sclerosis Patients.

BACKGROUND: Multiple sclerosis (MS) is a lifelong neurological disorder requiring care in a variety of settings. The purpose of this study is to describe preferences of general practitioners (GPs) with regards to providing care for MS patients. METHODS: A stratified sample of 900 GPs in the province of Quebec were sent a questionnaire, with 266 returning completed questionnaires. Respondents were surveyed about their preferences using four clinical scenarios describing hypothetical patients experiencing different stages of MS. Respondents were asked whether they would continue managing the patient themselves, formally refer the patient to a specialist, or seek specialist advice. RESULTS: In two scenarios representing stable courses, 40.9% and 61.6% of GPs, respectively, intended to manage the patient themselves. GPs who reported having experience with MS patients were more likely to report an intention to continue management. In one scenario, GPs operating in rural areas were less likely to consider management than those in the Montreal metropolitan area (odds ratio=0.422, 95% confidence interval 0.20-0.90). CONCLUSIONS: For MS patients with a stable disease course, an important proportion of GPs appear to be willing to manage long-term care for MS patients.

Exploring the acceptability and feasibility of conducting a large longitudinal population-based study in Canada.

ABSTRACTSuccessful recruitment and retention for population-based longitudinal studies requires understanding facilitators and barriers to participation. This study explored Canadians' views regarding one such study, the proposed Canadian Longitudinal Study on Aging (CLSA). Focus groups of participants > or =40 years of age were held in six proposed CLSA data collection sites (Halifax, Montreal, Hamilton, Winnipeg, Calgary, and Vancouver) to discuss participating in a long-term study of healthy aging. There was fundamental support for longitudinal research on health and aging. Altruism was a key motivation to participation, and universities were viewed as credible parties to conduct such studies. Participants had few worries about providing biological samples but expressed concern about potential misuse of genetic materials, commercialization of participant data, and privacy issues. These findings have already informed current, and will inform future, work on the CLSA, and will also provide useful information to researchers who undertake other population-based longitudinal studies.

The Canadian community health survey as a potential recruitment vehicle for the Canadian longitudinal study on aging.

ABSTRACTThe goal of the Canadian Longitudinal Study on Aging (CLSA) is to recruit 50,000 participants aged 45 to 85 years of age and follow them for at least 20 years. The sampling and recruitment processes for a study of this scope and magnitude present important challenges. Statistics Canada was approached to collaborate with the CLSA with the goal of determining whether the Canadian Community Health Survey (CCHS) could be used as a recruitment vehicle for the CLSA. In this pilot study conducted in 2004, it was determined that 63.8 per cent and 75.8 per cent of the respondents agreed to share their contact information and their survey responses with the CLSA, respectively. The most commonly reported concerns were confidentiality/privacy issues, lack of interest, and commitment issues. This pilot study identified some challenges to the use of the CCHS as a recruitment vehicle for the CLSA.

Telephone-administered cognitive tests as tools for the identification of eligible study participants for population-based research in aging.

ABSTRACTAs part of its recruitment process, the Canadian Longitudinal Study on Aging (CLSA) will face the challenge of screening out individuals who are sufficiently impaired in their ability to provide informed consent. In the process of developing the design of the CLSA, a review of the literature was performed with the goal of identifying currently existing telephone cognitive screening tools that can be used to identify eligible study participants for population-based research on aging. We identified 12 telephone screening tools, four of which were based on the Mini-Mental State Exam (MMSE) and eight that were based on other face-to-face screening tools. Characteristics - including the constructs measured, the length of time for administration, the scoring/classification scheme, and any information regarding the validation of each tool - were extracted and summarized.

Feasibility of biological specimen collection for the Canadian longitudinal study on aging (CLSA) biorepository.

ABSTRACTBiological specimen collection is an integral part of many longitudinal epidemiological studies. It is important to achieve high participant satisfaction for continuing involvement, and high sample quality for accurate biomarker measurement. We conducted a study to evaluate these issues on the sample collection proposed for the Canadian Longitudinal Study on Aging (CLSA). There were 85 participants recruited, and 65 attended either a hospital laboratory or private laboratory. Approximately 100 mL of blood and a random urine specimen were collected from each participant for a total of 2,108 sample aliquots. Quality standards were met for more than 90 per cent of samples and were similar for samples collected in both laboratories. More than 90 per cent of participants rated satisfaction with the collection as being good or excellent, and 84 per cent would be willing to repeat the collection in one to three years.

Ascertainment of chronic diseases in the Canadian longitudinal study on aging (CLSA), systematic review.

ABSTRACTStandard clinical diagnostic procedures are often inappropriate and frequently not feasible to apply in population-based studies, yet ascertaining accurate disease status is essential. We conducted a systematic review to identify algorithms, criteria, and tools used to ascertain 17 chronic diseases, and assessed the feasibility of developing algorithms for the CLSA. Of the 29,616 citations screened, 668 papers met all inclusion criteria. We determined that the information included in a disease algorithm will differ by condition type. The diagnosis of some symptomatic conditions, such as osteoarthritis and arthritis, will require substantiation by clinical criteria (e.g., x-rays, bone density measurement) while other conditions, such as depression, will rely solely on self-report. Asymptomatic conditions, such as hypertension, are more difficult to ascertain by self-report and will require additional physiologic measures (e.g., blood pressure) as well as laboratory measures (e.g., glucose). This pilot study identified the tools necessary to develop disease ascertainment algorithms.

Accessing health care utilization databases for health research: a Canadian longitudinal study on aging feasibility study.

ABSTRACTOne of the keys to the success of the Canadian Longitudinal Study on Aging (CLSA) will be the leveraging of secondary data sources, particularly health care utilization (HCU) data. To examine the practical, methodological, and ethical aspects of accessing HCU data, one-on-one qualitative interviews were conducted with 53 data stewards and privacy commissioners/ombudsmen from across Canada. Study participants indicated that obtaining permission to access HCU data is generally possible; however, they noted that this will be a complex and lengthy process requiring considerable and meticulous preparatory work to ensure proper documentation and compliance with jurisdictional variations along legislative and policy lines.