Dataset Information

Cohort profile: Dementia in the Registry of Senior Australians.

ABSTRACT:

Purpose

Clinical quality registries (CQRs) are being established in many countries to monitor, benchmark, and report on the quality of dementia care over time. Case ascertainment can be challenging given that diagnosis occurs in a variety of settings. The Registry of Senior Australians (ROSA) includes a large cohort of people with dementia from all Australian states and territories identified using routinely collected aged care assessment data. In ROSA, assessment data are linked to information about aged and health service use, medicine dispensing, hospitalisations and the National Death Index. The ROSA dementia cohort was established to capture people for the Australian dementia CQR currently in development who may not be identified elsewhere.

Participants

There were 373?695 people with dementia identified in aged care assessments from 2008 to 2016. Cross-sectional analysis from the time of cohort entry (e.g. when first identified with dementia on an aged care assessment) indicates that individuals were 84.1 years old on average, and 63.1% were female. More than 44% were first identified at entry to permanent residential aged care. The cohort recorded more severe cognitive impairment at entry than other international dementia registries.

Findings to date

The cohort has so far been used to demonstrate a declining prevalence of dementia in individuals entering the aged care sector, examine trends in psychotropic medicine prescribing, and to examine the impact of dementia on aged care service use and outcomes.

Future plans

The ROSA dementia cohort will be updated periodically and is a powerful resource both on its own and as a contributor to the Australian dementia CQR. Integration of the ROSA dementia cohort with the dementia CQR will ensure that people with dementia using aged care services can benefit from the ongoing monitoring and benchmarking of care that a registry can provide.

SUBMITTER: Cations M

PROVIDER: S-EPMC7852970 | biostudies-literature | 2021 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Cohort profile: Dementia in the Registry of Senior Australians.

Cations Monica M Lang Catherine E CE Ward Stephanie A SA Crotty Maria M Whitehead Craig C Maddison John J Inacio Maria M

BMJ open 20210201 2

<h4>Purpose</h4>Clinical quality registries (CQRs) are being established in many countries to monitor, benchmark, and report on the quality of dementia care over time. Case ascertainment can be challenging given that diagnosis occurs in a variety of settings. The Registry of Senior Australians (ROSA) includes a large cohort of people with dementia from all Australian states and territories identified using routinely collected aged care assessment data. In ROSA, assessment data are linked to info ...[more]

PMID: 33526495

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Project description:PurposeThe Registry of Senior Australians (ROSA) was established to evaluate aged care experiences in Australia. In this manuscript, we describe the ROSA framework, the two ROSA cohorts, highlights from research findings, and future plans.ParticipantsThe South Australian ROSA Prospective Cohort (August 2018-June 2020) enrolled 26 605 participants, of which 59.2% (N=15 745) are women, with a median age of 83 (interquartile range (IQR) 77-88). The National ROSA Historical Cohort (January 2002-June 2020) includes 1 694 206 participants with an aged care eligibility assessment, of which 59.1% (N=1 001 705) are women and the median age is 78 (IQR 72-83).Findings to dateMost research using the ROSA has focused on dementia, service accessibility, quality and safety of care, falls and injuries and quality use of medicines. The ROSA has also examined the experience of individuals with highly prevalent and understudied conditions in aged care settings (eg, eye and mental health) and aspects of services (eg, built environment) and innovation (eg, mobile radiological services) that can affect older people's health. Important learnings from the ROSA's development include the significant resources and multidisciplinary expertise required for establishing this platform. Between 2018 and 2022, 43 academic publications, eight reports of the Australian Government Royal Commission into Aged Care Quality and Safety, and several reports to state health authorities and professional societies have used the ROSA.Future plansOur plans include to: (1) continue delivering high-quality evidence to support the improvement of ageing and aged care services; (2) influence and improve the quality of research in and for the aged care sector; (3) expand scope to facilitate examining aims in more depth; (4) include future aged care sector data collections within the ROSA; (5) inform best practices and innovate how consumer engagement occurs in research; (6) monitor and evaluate the impact of the 2021 Australian Aged Care Reforms.

Project description:PurposeClinical registries are essential for evaluation of surgical outcomes. The Schulthess Shoulder Arthroplasty Registry (SAR) was established in 2006 to evaluate safety, function, quality-of-life and patient satisfaction in patients undergoing shoulder arthroplasty.ParticipantsAdult patients undergoing anatomic or reverse shoulder joint replacement at the Schulthess Klinik, a high-volume, leading orthopaedic surgery centre in Zürich, Switzerland.Findings to dateBetween March 2006 and December 2019, the registry covered 98% of eligible operations. Overall, 2332 patients were enrolled with a total of 2796 operations and 11 147 person-years of follow-up. Mean age at baseline was 71 (range: 20-95), 65% were women. Most common indication was rotator cuff tears with osteoarthritis (42%) and the mean preoperative Constant Score was 31 (±15). The most frequent arthroplasty type was reverse, increasing from 61% in 2006-2010 to 86% in 2015-2019. Functional recovery peaked at 12-month postoperatively and did not show a clinically relevant deterioration during the first ten follow-up years. Since its establishment, the registry was used to address multiple pertinent clinical and methodological questions. Primary focus was on comparing different implant configurations (eg, glenosphere diameter) and surgical techniques (eg, latissimus dorsi transfer) to maximise functional recovery. Additionally, the cohort contributed to the determination of the clinical relevance and validity of radiological monitoring of cortical bone resorption and scapular notching. Finally, SAR data helped to demonstrate that returning to sports was among key patient expectations after reverse shoulder arthroplasty.Future plansAs first patients are approaching the 15 years follow-up landmark, the registry will continue providing essential data on long-term functional outcomes, implant stability, revision rates and aetiologies as well as patient satisfaction and quality-of-life. In addition to research and quality-control, the cohort data will be brought back to the patients by bolstering real-time clinical decision support.

Project description:IntroductionAustralia's ageing population puts significant demands on the aged care and healthcare sectors. To monitor the provision of aged care and healthcare services to older people, each government body has an individual data collection system. Together these systems can be the basis for creating the evidence necessary to support future allocation of resources for our ageing community. The Registry of Older South Australians (ROSA) is a cross-sector multidisciplinary (ie, aged care and healthcare) platform built to address the challenges of monitoring people in aged care settings. This protocol describes the ROSA's framework and plans.Methods and analysisA registry to capture 16 000 South Australians/year undergoing an aged care eligibility assessment was designed. ROSA will contain information captured by the Commonwealth and South Australian state Health Authority, linked by two data integrating authorities, and housed on a secured data platform. ROSA will contain information on the sociodemographic, health, function, psychological, social, home and safety assessment and concerns characteristics, aged care services, general health services, and mortality of people receiving aged care services. Registered participants will be prospectively monitored until their death and yearly updates of their aged care and healthcare services information will be added to the registry.Ethics and disseminationROSA will longitudinally monitor the services provided to a population that puts costly demands on the state healthcare and aged care systems, identify unwanted variation, and underpin future research. ROSA's expected outputs include an annual report, a research agenda that focuses on high burden conditions and potentially economically impactful questions, educational materials, and risk profiling tools. ROSA was approved by the South Australian Department for Health and Ageing HREC (HREC/17/SAH/125) and the Australian Institute of Health and Welfare HREC (EO2018/2/429).

Dataset Information

Cohort profile: Dementia in the Registry of Senior Australians.

Purpose

Participants

Findings to date

Future plans

Publications

Cohort profile: Dementia in the Registry of Senior Australians.

Similar Datasets

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