Gender differences in home care clients and admission to long-term care in Ontario, Canada: a population-based retrospective cohort study

BACKGROUND: Home care is integral to enabling older adults to delay or avoid long-term care (LTC) admission. To date, there is little population-based data about gender differences in home care users and their subsequent outcomes. Our objectives were to quantify differences between women and men who used home care in Ontario, Canada and to determine if there were subsequent differences in LTC admission. METHODS: This is a population-based retrospective cohort study. We identified all adults aged 76+ years living in Ontario and receiving home care on April 1, 2007 (baseline). Using the Resident Assessment Instrument – Home Care (RAI-HC) linked to other databases, we characterized the cohort by living condition, health and functioning, and identified all acute care and LTC use in the year following baseline. RESULTS: The cohort consisted of 51,201 women and 20,102 men. Women were older, more likely to live alone, and more likely to rely on a child or child-in-law for caregiver support. Men most frequently identified a spouse as caregiver and their caregivers reported distress twice as often as women’s caregivers. Men had higher rates of most chronic conditions and were more likely to experience impairment. Men were more likely to be admitted to hospital, to have longer stays in hospital, and to be admitted to LTC. CONCLUSIONS: Understanding who uses home care and why is critical to ensuring that these programs effectively reduce LTC use. We found that women outnumbered men but that men presented with higher levels of need. This detailed gender analysis highlights how needs differ between older women, men, and their respective caregivers

Linkage of whole genome sequencing with administrative health, and electronic medical record data for the study of autism spectrum disorder: Feasibility, Opportunities and Challenges

Introduction Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder (NDD) that presents with a high degree of heterogeneity (e.g., co-occurrence of other NDDs and other co-morbid conditions), contributing to differential health system needs. Genetics are known to play an important role in ASD and may be associated with different disease trajectories. Objectives and Approach In this proof of principle project, our objective is to link >2,200 children with a confirmed diagnosis of a NDD from the Province of Ontario Neurodevelopmental (POND) Study to administrative health data and electronic medical record (EMR) data in order to identify subgroups of ASD with unique health system trajectories. POND includes detailed phenotype and whole genome sequencing (WGS) data. Identified subgroups will be characterized based on clinical phenotype and genetics. To meet this goal, consideration of WGS-specific privacy and data issues is needed to implement processes which are above and beyond traditional requirements for analyzing individual-level administrative health data. Results Linkage of WGS data with administrative health data is an emerging area of research. As such it has presented a number of initial challenges for our study of ASD. Privacy concerns surrounding the use of WGS data and rare-variant analysis are of particular importance. Practical issues required the need for analysts with expertise in administrative data, EMR data and genetic analyses, and specialized software and sufficient processing power to analyze WGS data. Transdisciplinary discussions of the scope and significance of research questions addressed through this linkage were crucial. The identification of genetic determinants of phenotypes and trajectories in ASD could support targeted early interventions; EMR linkage may inform algorithms to identify ASD in broader populations. These approaches could improve both patient outcome and family experience. Conclusion/Implications As the cost of genetic sequencing decreases, WGS data will become part of the routine clinical management of patients. Linkage of WGS, EMR and administrative data has tremendous potential that has largely not been realized; including population-level ASD research to improve our ability to predict long-term outcomes associated with ASD

Utilizing population-based clinical and administrative data to explore the relevance of frailty to cholinesterase inhibitor use and discontinuation at nursing home transition.

Introduction Cholinesterase inhibitors (ChEIs) are medications used to treat cognitive symptoms associated with Alzheimer’s disease. Previous studies examining the determinants of continued use or withdrawal of ChEIs during the transition into a nursing home have lacked detailed clinical information needed to understand the range of factors associated with pharmacotherapeutic decision-making. Objectives and Approach Population-based clinical and administrative health databases were linked to examine patterns of ChEI use among 47,851 adults (aged 66+) with dementia newly admitted to nursing homes in Ontario between April 2011-March 2015. We examined whether resident frailty, among other factors, was associated with ChEI discontinuation in the following year. Frailty was calculated using a validated 72-item index derived from the Resident Assessment Instrument (RAI-MDS 2.0). Discontinuation was defined as a 30-day period when no dispensations occurred and no supply of ChEI was available. Subdistribution hazard models estimated the association between resident characteristics and discontinuation, accounting for competing risk of death. Results Over one-third (36.7%) of residents were receiving a ChEI at admission and this proportion was lower among those defined as frail (33.6%) vs. non-frail (40.7%) at admission. Among those on a ChEI at admission, 82.3% continued use and 17.7% discontinued during the following year. After accounting for resident characteristics, ChEI type and previous use, the incidence of discontinuation was 15% higher in frail residents vs. non-frail residents (hazard ratio (HR)= 1.15, 95\% confidence interval (CI) [1.01,1.30]). Residents with severe aggressive behaviours (HR=1.82, 95% CI [1.60, 2.07]), and higher levels of cognitive impairment (HR=1.29, 95% CI [1.10, 1.51]) were more likely to discontinue. Residents aged 85+ (HR=0.69, 95% CI [0.61, 0.77]) and those who were widowed (HR=0.84, 95% CI [0.77, 0.91]) were less likely to discontinue. Conclusion/Implications Most residents who entered on a ChEI continued treatment during follow-up. The availability of linked clinical and administrative data allowed for a novel exploration of predictors of ChEI discontinuation. Frailty, severity of cognitive impairment and aggressive behaviours were associated with ChEI discontinuation; whereas selected sociodemographic factors predicted continued use

Validating a novel deterministic privacy-preserving record linkage between administrative & clinical data: applications in stroke research

Introduction Research data combined with administrative data provides a robust resource capable of answering unique research questions. However, in cases where personal health data are encrypted, due to ethics requirements or institutional restrictions, traditional methods of deterministic and probabilistic record linkages are not feasible. Instead, privacy-preserving record linkages must be used to protect patients' personal data during data linkage. Objectives To determine the feasibility and validity of a deterministic privacy preserving data linkage protocol using homomorphically encrypted data. Methods Feasibility was measured by the number of records that successfully matched via direct identifiers. Validity was measured by the number of records that matched with multiple indirect identifiers. The threshold for feasibility and validity were both set at 95%. The datasets shared a single, direct identifier (health card number) and multiple indirect identifiers (sex and date of birth). Direct identifiers were encrypted in both datasets and then transferred to a third-party server capable of linking the encrypted identifiers without decrypting individual records. Once linked, the study team used indirect identifiers to verify the accuracy of the linkage in the final dataset. Results With a combination of manual and automated data transfer in a sample of 8,128 individuals, the privacy-preserving data linkage took 36 days to match to a population sample of over 3.2 million records. 99.9% of the records were successfully matched with direct identifiers, and 99.8% successfully matched with multiple indirect identifiers. We deemed the linkage both feasible and valid. Conclusions As combining administrative and research data becomes increasingly common, it is imperative to understand options for linking data when direct linkage is not feasible. The current linkage process ensured the privacy and security of patient data and improved data quality. While the initial implementations required significant computational and human resources, increased automation keeps the requirements within feasible bounds

Supporting policy and practice in Ontario through ICES’ Applied Health Research Question (AHRQ) Program

ICES upholds a strong reputation for generating high-quality evidence to inform policy and practice through its collaborations with a broad range of health system stakeholders including government policymakers and healthcare providers including clinicians. Supported by the Ontario Ministry of Health and Ministry of Long-Term Care, the ICES Applied Health Research Question (AHRQ) Program leverages the data holdings and, scientific and clinical expertise to generate evidence tailored to the information needs of requestors. This paper outlines the approach, process, strengths, challenges and the resulting influence and impact to the healthcare landscape in Ontario

A Scoping Review of Frailty and Acute Care in Middle-Aged and Older Individuals with Recommendations for Future Research

There is general agreement that frailty is a state of heightened vulnerability to stressors arising from impairments in multiple systems leading to declines in homeostatic reserve and resiliency, but unresolved issues persist about its detection, underlying pathophysiology, and relationship with aging, disability, and multimorbidity. A particularly challenging area is the relationship between frailty and hospitalization. Based on the deliberations of a 2014 Canadian expert consultation meeting and a scoping review of the relevant literature between 2005 and 2015, this discussion paper presents a review of the current state of knowledge on frailty in the acute care setting, including its prevalence and ability to both predict the occurrence and outcomes of hospitalization. The examination of the available evidence highlighted a number of specific clinical and research topics requiring additional study. We conclude with a series of consensus recommendations regarding future research priorities in this important area

Ontario Neurodegenerative Disease Research Initiative (ONDRI): Structural MRI Methods and Outcome Measures

The Ontario Neurodegenerative Research Initiative (ONDRI) is a 3 years multi-site prospective cohort study that has acquired comprehensive multiple assessment platform data, including 3T structural MRI, from neurodegenerative patients with Alzheimer\u27s disease, mild cognitive impairment, Parkinson\u27s disease, amyotrophic lateral sclerosis, frontotemporal dementia, and cerebrovascular disease. This heterogeneous cross-section of patients with complex neurodegenerative and neurovascular pathologies pose significant challenges for standard neuroimaging tools. To effectively quantify regional measures of normal and pathological brain tissue volumes, the ONDRI neuroimaging platform implemented a semi-automated MRI processing pipeline that was able to address many of the challenges resulting from this heterogeneity. The purpose of this paper is to serve as a reference and conceptual overview of the comprehensive neuroimaging pipeline used to generate regional brain tissue volumes and neurovascular marker data that will be made publicly available online

Statin therapy and mortality among new long-term care residents in Ontario, Canada: the contribution of clinical assessment data to a population-based cohort study

ABSTRACT Objective There is limited evidence from randomized trials and observational studies to guide clinical practice regarding the use of statins in long-term care (LTC); the effectiveness of statins among those with limited life expectancy is not clear and there is concern that the risk of drug-related adverse events might outweigh any benefit. We examined the impact of initiating statin therapy on mortality for patients newly admitted to LTC. Approach Population-based health administrative data from Ontario, Canada were used to conduct a retrospective cohort study of newly admitted LTC residents, aged 66+ years and no statin use in the previous year, between January 1 2011 and December 31 2014. This cohort was linked to Resident Assessment Instrument (interRAI) data to capture clinical and functional characteristics (including frailty, activities of daily living, and cognitive function). The primary exposure was statin use within 30 days following LTC entry; residents who died or did not receive an interRAI assessment within 30 days were excluded. A propensity score for receiving statins was computed using resident demographic, clinical and functional characteristics. We matched exposed to unexposed patients on the basis of age (±1 year), sex, prior myocardial infarction(MI)/stroke hospitalization, frailty and propensity score (±0.2 standard deviations). Patients were followed in an intention-to-treat manner from the end of the exposure window until the earliest of death or March 31 2015. Cox regression was used to compare mortality between the study groups. Results We identified 39,560 newly admitted LTC residents aged 66+ years with no statin use in the previous year, of which 1,953 (4.9%) were prescribed a statin within 30 days of LTC entry. Propensity score matching resulted in 1,710 pairs of exposed and unexposed patients. In the matched cohort, those receiving statins had a lower rate of mortality compared with those not receiving statins (Hazard Ratio 0.77; 95% Confidence Interval [CI] 0.70-0.85). In pre-specified subgroup analyses, the association between statin use and reduced mortality persisted among those with and without a prior MI/stroke hospitalization and among those categorized as frail and not frail. Conclusion Our data suggest initiating statins may be beneficial in reducing mortality risk among LTC residents, despite the complexity and advanced age of the patients. By linking rich resident-level health and functional assessment data with health administrative data we were able to characterize the association between demographic and clinical characteristics (including frailty) and exposure to statins more fully than with administrative data alone