Dataset Information

The Canadian survey of health, lifestyle and ageing with multiple sclerosis: methodology and initial results.

ABSTRACT: People with multiple sclerosis (MS) are living longer so strategies to enhance long-term health are garnering more interest. We aimed to create a profile of ageing with MS in Canada by recruiting 1250 (5% of the Canadian population above 55?years with MS) participants and focusing data collection on health and lifestyle factors, disability, participation and quality of life to determine factors associated with healthy ageing.National multicentre postal survey.Recruitment from Canadian MS clinics, MS Society of Canada chapters and newspaper advertisements.People aged 55?years or older with MS symptoms more than 20?years.Validated outcome measures and custom-designed questions examining MS disease characteristics, living situation, disability, comorbid conditions, fatigue, health behaviours, mental health, social support, impact of MS and others.Of the 921 surveys, 743 were returned (80.7% response rate). Participants (mean age 64.6±6.2?years) reported living with MS symptoms for an average of 32.9±9.5?years and 28.6% were either wheelchair users or bedridden. There was only 5.4% missing data and 709 respondents provided optional qualitative information. According to data derived from the 2012 Canadian Community Health Survey of Canadians above 55?years of age, older people with MS from this survey sample are about eight times less likely to be employed full-time. Older people with MS were less likely to engage in regular physical activity (26.7%) compared with typical older Canadians (45.2%). However, they were more likely to abstain from alcohol and smoking.Despite barriers to participation, we were able to recruit and gather detailed responses (with good data quality) from a large proportion of older Canadians with MS. The data suggest that this sample of older people with MS is less likely to be employed, are less active and more disabled than other older Canadians.

SUBMITTER: Ploughman M

PROVIDER: S-EPMC4120418 | biostudies-literature | 2014

REPOSITORIES: biostudies-literature

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The Canadian survey of health, lifestyle and ageing with multiple sclerosis: methodology and initial results.

Ploughman Michelle M Beaulieu Serge S Harris Chelsea C Hogan Stephen S Manning Olivia J OJ Alderdice Penelope W PW Fisk John D JD Sadovnick A Dessa AD O'Connor Paul P Morrow Sarah A SA Metz Luanne M LM Smyth Penelope P Mayo Nancy N Marrie Ruth Ann RA Knox Katherine B KB Stefanelli Mark M Godwin Marshall M

BMJ open 20140710 7

<h4>Objective</h4>People with multiple sclerosis (MS) are living longer so strategies to enhance long-term health are garnering more interest. We aimed to create a profile of ageing with MS in Canada by recruiting 1250 (5% of the Canadian population above 55 years with MS) participants and focusing data collection on health and lifestyle factors, disability, participation and quality of life to determine factors associated with healthy ageing.<h4>Design</h4>National multicentre postal survey.<h4 ...[more]

PMID: 25011993

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Project description:ObjectiveLittle work has evaluated integrated models of care in multiple sclerosis (MS) and the composition of MS care teams across Canada is largely unknown. We aimed to gather information regarding existing models of MS care across Canada, and to assess the perceptions of health care providers (HCPs) regarding the models of care required to fully meet the needs of the person with MS.MethodsWe conducted an anonymous online survey targeting Canadian HCPs working in MS Clinics, and neurologists delivering MS care whether or not they were based in an MS Clinic. We queried the types of HCPs delivering care within formal MS Clinics, wait times for HCPs, the perceived importance of different types of HCPs for good quality care, assessments conducted, and whether clinic databases were used. We summarized survey responses using descriptive statistics.ResultsOf the 716 HCPs to whom the survey was distributed, 100 (13.9%) people responded. Of the 100 respondents, 85 (85%) indicated that their clinical practice included people with MS and responded to specific questions about clinical care. The most common types of providers within MS Clinics with integrated models of care were neurologists and MS nurses. Of 23 responding MS Clinics, 10 (43.5%) indicated that there were not enough neurologists, and 16 (69.6%) indicated that there were not enough non-neurologist HCPs to provide adequate care. More than 50% of clinics reported wait times exceeding 3 months for physiatrists, physiotherapists, psychiatrists, psychologists, neuropsychologists and urologists; in some clinics wait times for these providers exceeded 1 year. Multiple disciplines were identified as important or very important for delivering good quality MS care. Over 90% of respondents thought it was important for neurologists, nurse practitioners, MS nurses and psychiatrists to be co-located within MS Clinics.ConclusionCanadian HCPs viewed the ideal MS service as being multidisciplinary in nature and ideally integrated. Efforts are needed to improve timely access to specialized MS care in Canada, and to evaluate how outcomes are influenced by access to care.

Project description:CANADIAN COMMUNITY HEALTH NURSES (CHNS) WORK IN DIVERSE URBAN, RURAL, AND REMOTE SETTINGS SUCH AS: public health units/departments, home health, community health facilities, family practices, and other community-based settings. Research into specific learning needs of practicing CHNs is sparsely reported. This paper examines Canadian CHNs learning needs in relation to the 2008 Canadian Community Health Nursing Standards of Practice (CCHN Standards). It answers: What are the learning needs of CHNs in Canada in relation to the CCHN Standards? What are differences in CHNs' learning needs by: province and territory in Canada, work setting (home health, public health and other community health settings) and years of nursing practice?Between late 2008 and early 2009 a national survey was conducted to identify learning needs of CHNs based on the CCHN Standards using a validated tool.Results indicated that CHNs had learning needs on 25 of 88 items (28.4%), suggesting CHNs have confidence in most CCHN Standards. Three items had the highest learning needs with mean scores > 0.60: two related to epidemiology (means 0.62 and 0.75); and one to informatics (application of information and communication technology) (mean = 0.73). Public health nurses had a greater need to know about "…evaluating population health promotion programs systematically" compared to home health nurses (mean 0.66 vs. 0.39, p <0.010). Nurses with under two years experience had a greater need to learn "… advocating for healthy public policy…" than their more experienced peers (p = 0.0029). Also, NPs had a greater need to learn about "…using community development principles when engaging the individual/community in a consultative process" compared to RNs (p = 0.05). Many nurses were unsure if they applied foundational theoretical frameworks (i.e., the Ottawa Charter of Health Promotion, the Jakarta Declaration, and the Population Health Promotion Model) in practice.CHN educators and practice leaders need to consider these results in determining where to strengthen content in graduate and undergraduate nursing programs, as well as professional development programs. For practicing CHNs educational content should be tailored based on learner's years of experience in the community and their employment sector.

Project description:Autoinjectors are well-established in supporting multiple sclerosis (MS) therapy. This market survey was aimed at investigating patients' rating of three devices for subcutaneous interferon beta formulations: the electronic autoinjectors Betaconnect® and RebiSmart™ as well as the mechanical ExtaviPro™ device.Organization and conduction of structured face-to-face interviews in five German cities were managed through an independent external market research company. After questionnaire validation (n=15), 85 participants currently either using the Betaconnect (n=39), the RebiSmart (n=36) or the ExtaviPro injector (n=10) were asked 22 questions in the same order. First, patients named their current device in use, watched the corresponding instruction video, and were queried about their device. Second, patients were asked about their opinion of an ideal autoinjector. Third, instruction videos for the two non-used devices were presented and participants could dummy-inject into a pillow. Last, patients evaluated device features and indicated their preferred autoinjector.Before having been presented the two other autoinjectors not in use, evaluation of patients' satisfaction with their own device revealed that 82% of the Betaconnect users, 67% of the RebiSmart and 60% of the ExtaviPro users were highly satisfied. All patients desired some improvement of their own device particularly concerning optimization of size and handling. Subsequent to testing and watching instruction videos of all devices, the Betaconnect received the best rating regarding different functions. Finally, participants indicated their preferred autoinjector, provided their own medication was suitable for all three devices: 56.5% of the participants (n=48/85) chose the Betaconnect, 36.5% the RebiSmart (n=31/85), and 5% the ExtaviPro device (n=4/85); 2% did not answer (n=2/85).In this survey, the Betaconnect device was the preferred autoinjector and may currently best meet patients' needs. As it was closest to participants' opinion of an ideal device, the Betaconnect might contribute to treatment adherence. Our results need to be confirmed in further studies.

Project description:The Mediterranean dietary pattern has been associated with a decreased risk of many degenerative diseases and cognitive function in particular; however, relevant information from Mediterranean regions, where the prototype Mediterranean diet is typically adhered to, have been very limited. Additionally, predefined Mediterranean diet (MeDi) scores with use of a priori cut-offs have been used very rarely, limiting comparisons between different populations and thus external validity of the associations. Finally, associations between individual components of MeDi (i.e., food groups, macronutrients) and particular aspects of cognitive performance have rarely been explored. We evaluated the association of adherence to an a priori defined Mediterranean dietary pattern and its components with dementia and specific aspects of cognitive function in a representative population cohort in Greece.Participants from the Hellenic Longitudinal Investigation of Ageing and Diet (HELIAD), an on-going population-based study, exploring potential associations between diet and cognitive performance in a representative sample from Greek regions, were included in this analysis. Diagnosis of dementia was made by a full clinical and neuropsychological evaluation, while cognitive performance was assessed according to five cognitive domains (memory, language, attention-speed, executive functioning, visuospatial perception) and a composite cognitive score. Adherence to MeDi was evaluated by an a priori score (range 0-55), derived from a detailed food frequency questionnaire.Among 1,865 individuals (mean age 73±6 years, 41% male), 90 were diagnosed with dementia and 223 with mild cognitive impairment. Each unit increase in the Mediterranean dietary score (MedDietScore) was associated with a 10% decrease in the odds for dementia. Adherence to the MeDi was also associated with better performance in memory, language, visuospatial perception and the composite cognitive score; the associations were strongest for memory. Fish consumption was negatively associated with dementia and cognitive performance positively associated with non-refined cereal consumption.Our results suggest that adherence to the MeDi is associated with better cognitive performance and lower dementia rates in Greek elders. Thus, the MeDi in its a priori constructed prototype form may have cognitive benefits in traditional Mediterranean populations.

Project description:BackgroundAccurate estimates of the usual intake of nutrients are important for monitoring nutritional adequacy and diet quality of populations. In Canada, comprehensive, nationally representative nutrient estimates have not been available since the Canadian Community Health Survey (CCHS)-Nutrition 2004 survey.ObjectiveThe objective of this research was to assess nutrient intakes, distributions, and adequacy of the intakes of Canadian adults.MethodsParticipants' first 24-h dietary recall, and the second-day recall from a subset of participants from the recently released CCHS 2015 Public Use Microdata File (PUMF) were used to estimate usual intakes of macronutrients, vitamins, and minerals in adults [≥19 y, excluding lactating females and those with invalid energy intake (EI)]. Usual intakes by DRI age-sex groups were estimated using the National Cancer Institute method, adjusted for age, sex, misreporting status, weekend/weekday, and sequence of recall analyzed (first/second) with outliers removed (final sample, n = 11,992). Usual intakes from food were assessed for prevalence of inadequacy in relation to DRI recommendations.ResultsCanadian macronutrient intakes were within the recommended acceptable macronutrient distribution ranges. EI was 2154 kcal/d for males (19+) and 1626 kcal/d for females (19+). A high prevalence of inadequate intakes was seen for vitamin A (>47%), vitamin D (>94%), vitamin C (>29% for nonsmokers and >59% for smokers), magnesium (>45%), and calcium (>44%), whereas <25% and <40% of adults (19+) had intakes above the adequate intake for fiber and potassium, respectively. Canadians continue to consume sodium in excess of recommendations (74.8% of males and 47.6% of females).ConclusionsA significant number of Canadian adults may not be meeting recommendations for several essential nutrients, contributing to nutrient inadequacies. These results highlight the nutrients of concern by specific age-sex groups that may be important for public health interventions aimed at improving diet quality and nutrient adequacy for Canadian adults.

Project description:BACKGROUND:A small proportion of the population consumes the majority of health care resources. High-cost health care users are a heterogeneous group. We aim to segment a provincial population into relevant homogenous sub-groups to provide actionable information on risk factors associated with high-cost health care use within sub-populations. METHODS:The Canadian Institute for Health Information (CIHI) Population Grouping methodology was used to define mutually exclusive and clinically relevant health profile sub-groups. High-cost users (> = 90th percentile of health care spending) were defined within each sub-group. Univariate analyses explored demographic, socio-economic status, health status and health care utilization variables associated with high-cost use. Multivariable logistic regression models were constructed for the costliest health profile groups. RESULTS:From 2015 to 2017, 1,175,147 individuals were identified for study. High-cost users consumed 41% of total health care resources. Average annual health care spending for individuals not high-cost were $642; high-cost users were $16,316. The costliest health profile groups were 'long-term care', 'palliative', 'major acute', 'major chronic', 'major cancer', 'major newborn', 'major mental health' and 'moderate chronic'. Both 'major acute' and 'major cancer' health profile groups were largely explained by measures of health care utilization and multi-morbidity. In the remaining costliest health profile groups modelled, 'major chronic', 'moderate chronic', 'major newborn' and 'other mental health', a measure of socio-economic status, low neighbourhood income, was statistically significantly associated with high-cost use. INTERPRETATION:Model results point to specific, actionable information within clinically meaningful subgroups to reduce high-cost health care use. Health equity, specifically low socio-economic status, was statistically significantly associated with high-cost use in the majority of health profile sub-groups. Population segmentation methods, and more specifically, the CIHI Population Grouping Methodology, provide specificity to high-cost health care use; informing interventions aimed at reducing health care costs and improving population health.

Dataset Information

The Canadian survey of health, lifestyle and ageing with multiple sclerosis: methodology and initial results.

Publications

The Canadian survey of health, lifestyle and ageing with multiple sclerosis: methodology and initial results.

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