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Filling the gaps in SARDs research: collection and linkage of administrative health data and self-reported survey data for a general population-based cohort of individuals with and without diagnoses of systemic autoimmune rheumatic disease (SARDs) from British Columbia, Canada.

ABSTRACT: Systemic autoimmune rheumatic diseases (SARDs) are a group of debilitating autoimmune diseases, including systemic lupus erythematosus and related disorders. Assessing the healthcare and economic burden of SARDs has been challenging: while administrative databases can be used to determine healthcare utilisation and costs with minimal selection and recall bias, other health, sociodemographic and economic data have typically been sourced from highly selected, clinic-based cohorts. To address these gaps, we are collecting self-reported survey data from a general population-based cohort of individuals with and without SARDs and linking it to their longitudinal administrative health data.Using administrative data from the province of British Columbia (BC), Canada, we established a population-based cohort of all BC adults receiving care for SARDs during 1996-2010 (n=20 729) and non-SARD individuals randomly selected from the general population. BC Ministry of Health granted us contact information for 12 000 SARD and non-SARD individuals, who were recruited to complete the surveys by mail or online.Four hundred individuals were initially invited to participate, with 135 (34%) consenting and 127 (94%) submitting the first survey (72% completed online). Sixty-three (49.6%) reported ≥1 SARD diagnosis. The non-SARDs group (n=64) was 92% female with mean age 57.0±11.6 years. The SARDs group (n=63) was 94% female with mean age 56.5±13.1 years. Forty-eight per cent of those with SARDs were current-or-former smokers (mean 10.6±16.2 pack-years), and 33% were overweight or obese (mean body mass index of 24.4±5.3).Health and productivity data collected from the surveys will be linked to participants' administrative health data from the years 1990-2013, allowing us to determine the healthcare and lost productivity costs of SARDs, and assess the impact of patient-reported variables on utilisation, costs, disability and clinical outcomes. Findings will be disseminated through scientific conferences and peer-reviewed journals.

SUBMITTER: McCormick N

PROVIDER: S-EPMC5541381 | biostudies-other | 2017 Jun

REPOSITORIES: biostudies-other

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Project description:BACKGROUND:There are a range of perceived gaps and shortcomings in the publicly funded Canadian health system. These include wait times for care, lack of public insurance coverage for dental care and pharmaceuticals, and difficulties accessing specialist care. Medical crowdfunding is a response to these gaps where individuals raise funds from their social networks to address health-related needs. OBJECTIVE:This study aimed to investigate the potential of crowdfunding data to better understand what health-related needs individuals are using crowdfunding for, how these needs compare with the existing commentary on health system deficiencies, and the advantages and limitations of using crowdfunding campaigns to enhance or augment our understanding of perceived health system deficiencies. METHODS:Crowdfunding campaigns were scraped from the GoFundMe website. These campaigns were then limited to those originating in the metropolitan Vancouver region of two health authorities during 2018. These campaigns were then further limited to those raising funds to allow the treatment of a medical problem or related to needs arising from ill health. These campaigns were then reviewed to identify the underlying health issue and motivation for pursuing crowdfunding. RESULTS:We identified 423 campaigns for health-related needs. These campaigns requested CAD $8,715,806 (US $6,088,078) in funding and were pledged CAD $3,477,384 (US $2,428,987) from 27,773 donors. The most common underlying medical condition for campaign recipients was cancer, followed by traumatic injuries from collisions and brain injury and stroke. By far, the most common factor of motivation for crowdfunding was seeking financial support for wages lost because of illness (232/684, 33.9%). Some campaigns (65/684, 9.5%) sought help with purchasing medical equipment and supplies; 8.2% (56/684) sought to fund complementary, alternative, or unproven treatments including experimental interventions; 7.2% (49/684) sought financial support to cover travel-related costs, including in-province and out-of-province (49/684, 7.2%) travel; and 6.3% (43/684) campaigns sought help to pay for medication. CONCLUSIONS:This analysis demonstrates the potential of crowdfunding data to present timely and context-specific user-created insights into the perceived health-related financial needs of some Canadians. Although the literature on perceived limitations of the Canadian health system focuses on wait times for care and limited access to specialist services, among other issues, these campaigners were much more motivated by gaps in the wider social system such as costs related to unpaid time off work and travel to access care. Our findings demonstrate spatial differences in the underlying medical problems, motivations for crowdfunding, and success using crowdfunding that warrants additional attention. These differences may support established concerns that medical crowdfunding is most commonly used by individuals from relatively privileged socioeconomic backgrounds. We encourage the development of new resources to harness the power of crowdfunding data as a supplementary source of information for Canadian health system stakeholders.

Project description:Legionella spp. present in some human-made water systems can cause Legionnaires' disease in susceptible individuals. Although legionellae have been isolated from the natural environment, variations in the organism's abundance over time and its relationship to aquatic microbiota are poorly understood. Here, we investigated the presence and diversity of legionellae through 16S rRNA gene amplicon and metagenomic sequencing of DNA from isolates collected from seven sites in three watersheds with varied land uses over a period of 1 year. Legionella spp. were found in all watersheds and sampling sites, comprising up to 2.1% of the bacterial community composition. The relative abundance of Legionella tended to be higher in pristine sites than in sites affected by agricultural activity. The relative abundance levels of Amoebozoa, some of which are natural hosts of legionellae, were similarly higher in pristine sites. Compared to other bacterial genera detected, Legionella had both the highest richness and highest alpha diversity. Our findings indicate that a highly diverse population of legionellae may be found in a variety of natural aquatic sources. Further characterization of these diverse natural populations of Legionella will help inform prevention and control efforts aimed at reducing the risk of Legionella colonization of built environments, which could ultimately decrease the risk of human disease. IMPORTANCE Many species of Legionella can cause Legionnaires' disease, a significant cause of bacterial pneumonia. Legionella in human-made water systems such as cooling towers and building plumbing systems are the primary sources of Legionnaires' disease outbreaks. In this temporal study of natural aquatic environments, Legionella relative abundance was shown to vary in watersheds associated with different land uses. Analysis of the Legionella sequences detected at these sites revealed highly diverse populations that included potentially novel Legionella species. These findings have important implications for understanding the ecology of Legionella and control measures for this pathogen that are aimed at reducing human disease.

Project description:BackgroundIn 2011, the province of British Columbia (BC) moved to allow patients with complex rheumatic disease to be seen by nurses along with their rheumatologist by introducing a 'Multidisciplinary Care Assessments' (MCA) billing code (G31060).ObjectiveTo describe multidisciplinary care introduced as part of MCAs across BC and investigate the perceived impact of this intervention, the addition of nurses to the care team, on patient care from the perspective of patients, nurses, and rheumatologists.MethodsWe conducted semi-structured interviews, informed by a qualitative evaluation approach with patients, nurses, and rheumatologists from September 2019 - August 2020. Interviews investigated 1) the experiences of all stakeholders with adopting the multidisciplinary care billing code, 2) the perceived role of the nurse in the care team, and 3) the perceived impact of multidisciplinary care on patient experience and outcomes. We purposefully sampled practices for maximum variation of geographical location (rural vs. urban), size of practice (i.e., patient caseload), and number of nurses employed.ResultsWe interviewed 21 patients, 13 nurses, and 12 rheumatologists from across BC. Our analysis identified variation in the way rheumatologists adopted multidisciplinary care across BC. Our analysis showed some heterogeneity in the way the MCA was delivered in rheumatology practices; however, patient education was identified as the core role of nurses across practices. We identified six core themes describing the impact of this model of care, all representing improvements in the way practices functioned, from improved efficiency to access, patient experience, time management, clinician experience, and patient health outcomes. Contextual factors that influenced the presence of these themes were related to the time the nurses spent with patients and the professional roles they performed.ConclusionOur results suggest nurse care can complement physician care by extending contact time for patients and promoting the efficient use of health care professionals' skills, time, and resources. These data may encourage future uptake of the billing code to help ensure the policy delivers maximum benefits to patients given the wide range of perceived benefits described by clinicians and patients.

Project description:BackgroundClose-contact rates are thought to be a driving force behind the transmission of many infectious respiratory diseases. Yet, contact rates and their relation to transmission and the impact of control measures, are seldom quantified. We quantify the response of contact rates, reported cases and transmission of COVID-19, to public health contact-restriction orders, and examine the associations among these three variables in the province of British Columbia, Canada.MethodsWe derived time series data for contact rates, daily cases and transmission of COVID-19 from a social contacts survey, reported case counts and by fitting a transmission model to reported cases, respectively. We used segmented regression to investigate impacts of public health orders; Pearson correlation to determine associations between contact rates and transmission; and vector autoregressive modeling to quantify lagged associations between contacts rates, daily cases, and transmission.ResultsDeclines in contact rates and transmission occurred concurrently with the announcement of public health orders, whereas declines in cases showed a reporting delay of about 2 weeks. Contact rates were a significant driver of COVID-19 and explained roughly 19 and 20% of the variation in new cases and transmission, respectively. Interestingly, increases in COVID-19 transmission and cases were followed by reduced contact rates: overall, daily cases explained about 10% of the variation in subsequent contact rates.ConclusionWe showed that close-contact rates were a significant time-series driver of transmission and ultimately of reported cases of COVID-19 in British Columbia, Canada and that they varied in response to public health orders. Our results also suggest possible behavioral feedback, by which increased reported cases lead to reduced subsequent contact rates. Our findings help to explain and validate the commonly assumed, but rarely measured, response of close contact rates to public health guidelines and their impact on the dynamics of infectious diseases.

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Filling the gaps in SARDs research: collection and linkage of administrative health data and self-reported survey data for a general population-based cohort of individuals with and without diagnoses of systemic autoimmune rheumatic disease (SARDs) from British Columbia, Canada.

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