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This study aimed to develop an efficient data collection and curation process for all drugs and natural health products (NHPs) used by participants to the Canadian Longitudinal Study on Aging (CLSA). The three-step sequential process consisted of (a) mapping drug inputs collected through the CLSA to the Health Canada Drug Product Database (DPD), (b) algorithm recoding of unmapped drug and NHP inputs, and (c) manual recoding of unmapped drug and NHP inputs. Among the 30,097 CLSA comprehensive cohort participants, 26,000 (86.4%) were using a drug or an NHP with a mean of 5.3 (SD 3.8) inputs per participant user for a total of 137,366 inputs. Of those inputs, 70,177 (51.1%) were mapped to the Health Canada DPD, 20,729 (15.1%) were recoded by algorithms, and 44,108 (32.1%) were manually recoded. The Direct algorithm correctly classified 99.4 per cent of drug inputs and 99.5 per cent of NHP inputs. We developed an efficient three-step process for drug and NHP data collection and curation for use in a longitudinal cohort.

We validated seven chronic disease ascertainment algorithms for use in the Canadian Longitudinal Study on Aging. The algorithms pertained to diabetes mellitus type 2, parkinsonism, chronic airflow obstruction (CAO), hand osteoarthritis (OA), hip OA, knee OA, and ischemic heart disease. Our target recruitment was 20 cases and controls per disease; some cases were controls for unrelated diseases. Participants completed interviewer-administered disease symptom and medication use questionnaires. Diabetes cases and controls underwent fasting glucose testing; CAO cases and controls underwent spirometry testing. For each disease, the appropriate algorithm was used to classify participants' disease status (positive or negative for disease). We also calculated sensitivity and specificity using physician diagnosis as the reference standard. The final sample involved 176 participants recruited in three Canadian cities between 2009 and 2011. Most estimated sensitivities and specificities were 80 per cent or more, indicating that the seven algorithms correctly identified individuals with the target disease.

Community-dwelling seniors increasingly require physical assistance to perform the activities of daily living (ADL). To examine the possible association of this need with psychological distress, we conducted a prospective cohort study of community-dwelling people age 75 and older in Montreal, Canada. We report the results for women only (n = 530). Multivariable linear regression was used to examine the association between met and unmet need in instrumental ADL (IADL) and personal ADL (PADL) with concomitant psychological distress. Unmet IADL need was associated with elevated psychological distress [β = 0.42 (95% CI: 0.26, 0.60)], as was met IADL need [β = 0.19 (95% CI: 0.06, 0.33)], but not met and unmet PADL need. The full model explained 32.8 per cent of the total variance in psychological distress. Receiving assistance to meet IADL needs is associated with elevated psychological distress. Not receiving assistance, however, is associated with even greater distress.

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.

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.

ABSTRACTCanadians are living longer, and older persons are making up a larger share of the population (14% in 2006, projected to rise to 20% by 2021). The Canadian Longitudinal Study on Aging (CLSA) is a national longitudinal study of adult development and aging that will recruit 50,000 Canadians aged 45 to 85 years of age and follow them for at least 20 years. All participants will provide a common set of information concerning many aspects of health and aging, and 30,000 will undergo an additional in-depth examination coupled with the donation of biological specimens (blood and urine). The CLSA will become a rich data source for the study of the complex interrelationship among the biological, physical, psychosocial, and societal factors that affect healthy aging.

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.

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.

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.

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.

Caregivers play a determining role in choosing treatments for persons with Alzheimer's disease. The objective of this study was to examine caregivers' willingness to have persons with Alzheimer's disease continue taking cholinesterase inhibitors in the event that any 1 of 11 adverse effects was to occur. Data were gathered via postal questionnaire from 375 caregivers in Montreal. Sixty-four per cent of caregivers responded ( n = 201), and most (> or =59%) were willing to continue treatment if persons with Alzheimer's disease suffered from weight loss or loss of appetite. However, most (> or =53%) were not willing to continue treatment in the event of headache, dizziness, nausea, diarrhea, vomiting, drop in blood pressure, insomnia, muscle cramps, or stomach bleeding. The use of cholinesterase inhibitors by persons with Alzheimer's disease was positively associated with caregivers' willingness to accept greater numbers of adverse effects (adjusted relative risk = 1.97; 95% CI = 1.11 to 3.61). Caregivers appear to make a risk-benefit assessment when they decide whether or not care-recipients should continue pharmacotherapy in the event of adverse effects.

Physicians (N=803) were contacted via postal survey and given two sets of efficacy measures for drug treatments in Alzheimer's disease: (a) the time that patients spend in a mild or moderate state of disease; (b) levels of modification to disease progression in the areas of cognition, behaviour, and mood, and ability to perform basic activities of daily living. Physicians reported that they would prescribe a hypothetical, new Alzheimer's disease medication if it would allow patients to remain in their current disease state for 15 (mild) or 11 (moderate) additional months. Most physicians required a permanent halt to, or some reversal of, disease progression as a prerequisite for prescribing; a few required substantial reversal. More stringent efficacy requirements were negatively associated with physicians' current prescribing of cholinesterase inhibitors to persons with Alzheimer's disease, although the effects were either small (odds ratio=0.99) or not statistically significant at the 5 per cent level. The results suggest that physicians with stringent efficacy requirements for clinically relevant efficacy measures are less likely to prescribe cholinesterase inhibitors.

Purpose: This study estimates the prevalence of problems with transportation in a sample of community-dwelling seniors residing in an urban setting and investigates the role that gender plays in the ability of seniors to remain mobile in their communities., Design and Methods: Data collected as part of a study assessing the prevalence and consequences of unmet needs for community-based services in a random sample of 839 elderly aged 75 years and older were employed in bivariate and multivariable analyses., Results: The prevalence of problems with transportation was 23 per cent, with 33 per cent of females and 10 per cent of males categorized as having problems with transportation. Of those subjects categorized as having problems with transportation, 88 per cent were women. In addition to being predominantly women, those who reported problems with transportation were older, in poorer health, and had lower income and income satisfaction., Implications: Problems with transportation are an important issue facing seniors; women, in particular. These results highlight the differences in aging as experienced by women and men with respect to social effects, needs, and the significance attached to the experience.