Each year in Australia, thousands of families face the realities of dementia in a loved one. After a diagnosis of dementia, people with dementia and their families will navigate a fragmented health and support system that can be confusing and highly variable across the country. Ensuring that high quality care is provided to patients with dementia is essential for good patient outcomes, reduces strain on health services and is very important for affected families.

Australian Dementia Network Clinical Quality Registry researchers 1 run by our school, recently worked with the Registry of Senior Australians (ROSA) in Adelaide to examine Australia’s performance in dementia care as measured by four clinical quality indicators (CQIs). The resulting article was published in Scientific reports. The study used the Registry of Senior Australians (ROSA) platform, which linked the elderly care and health care records of older people receiving elderly care services across Australia. The aim of the study was to use this platform to derive and monitor over time a number of indicators of the quality of care for people with dementia in elderly care facilities.

Dementia is increasing globally and has been identified by many governments and health agencies as a priority, but measuring the quality of associated care can be difficult, due to the diffuse range of settings in which dementia care is. dispensed and the range of healthcare professionals involved. ACQs are structures, processes, or measurable outcomes that can be used to monitor and compare the care provided at the population level, and variations in ACQ performance can indicate geographic areas or populations that need it most. policy interventions and quality improvement.

Four CQIs with significant impacts on quality of life were assessed in data from ROSA’s database of people receiving elderly care services in Australia:

  1. exposure to antipsychotic drugs
  2. use of cholinesterase inhibitors and memantine
  3. exposure to a high load of sedative drugs
  4. and hospitalizations related to dementia or delirium

The retrospective cohort study involved linking data from ROSA to drug prescription data from the Pharmaceutical Benefits Scheme, state hospital records, the National Death Index, and the Australian Institute of Health and Welfare. 373,695 people with dementia in the ROSA database were included. The incidence rate for the four indicators has changed little over the past five years. With no discernible improvement over the past five years, the study ably highlighted a gap in service delivery and offers insight into strategies to improve the situation. The team was therefore recently awarded the Health Services Research Association of Australia and New Zealand – Early Career Researcher – Award for Best Health Services and Policy Research Paper of the Year.

The potential of the ROSA dataset to test other measures of quality of care is currently being explored by researchers, using the CQIs developed by the ADNeT registry and reported in the Journal of Alzheimer’s Disease in 2020 2. These data linkage results will provide further evidence of the feasibility and utility of the proposed CQIs, and support the incorporation into the eDNA registry of indicators that are most accurately reported in real world data. In particular, since people with dementia typically do not have continuity of care, the use of data linkage with existing administrative datasets provides a unique opportunity to follow up complications and longitudinal outcomes that would otherwise be. impossible for this cohort at the population level.

Researcher, Prof Susannah Ahern, says: “This study highlights the utility of data linkage for tracking trends in mid- and long-term dementia outcomes in Australia. This will be an important follow-up mechanism for people with dementia for whom outcome data is sorely lacking. Platforms like ROSA, which include sustainably linked datasets, are fantastic resources that make this kind of research fast and secure. The ADNeT registry is eager to use both clinician-derived data regarding diagnosis and early management, and government-reported data regarding longer-term outcomes, to create a comprehensive picture of the pathway to disease. dementia to improve our clinical care for people with dementia and to inform health policy. and the needs of health services. ‘

The references

1 Lin X, Wallis K, Ward S, Brodaty H, Sachdev P, Naismith S, Krysinska K, McNeil J, Rowe C, Ahern S. The protocol for a clinical grade registry for dementia and mild cognitive impairment (MCI) : The Australian Dementia Network Register (ADNeT). BMC Geriatrics. 2020 Sep 7; 20 (1): 330. doi: 10.1186 / s12877-020-01741-2.

2 Ayton D, Gardam M, Ward S, Brodaty H, Pritchard E, Earnest A, Krysinska K, Banaszak-Holl J, McNeil J, Ahern S. How do you measure the quality of dementia care? The development of clinical quality indicators for an Australian pilot dementia registry. J Alzheimer Dis. 2020; 75 (3): 923-936. doi: 10.3233 / JAD-191044.

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