The Australian Dementia Network Registry: A Nationwide Clinical Quality Registry to monitor and improve dementia diagnosis and care

Abstract

AbstractBackgroundMany Australians live with dementia, yet limited evidence suggests there are unacceptable variations in clinical care. Until now there had been no systematic collection of high‐quality clinical data that benchmarks practice and helps drive improvements.MethodThe Australian Dementia Network (ADNeT) Registry, a clinical quality registry designed to close this gap, recruits sites involved in dementia diagnosis, such as memory clinics, and collects a minimum dataset from clinicians at the time of diagnosis of either dementia or mild cognitive impairment (MCI). The Registry later sends information to patients (and/or caregivers), including on how to withdraw if preferred, and collects co‐designed patient and/or caregiver outcome and experience measures by survey. The Registry oversees data analysis, generates clinical quality indicators (CQIs), and facilitates timely access for providers to this data.ResultCommencing in 2020, ADNeT Registry has so far collected data from 55 clinics, representing all Australian states, including from regional and rural areas, and public and private providers. Data on the 2250 participants to date, 1552 (69%) with dementia and 698 (31%) with MCI, indicates a median time from referral to diagnosis of 126 days. For dementia and MCI, respectively, mean ages (SD) at diagnosis are 78.7(8.7) and 76.8 (8.8) years, and mean MMSE scores are 20.7(5.3) and 26.1 (2.8). The most common dementia subtype diagnosed is Alzheimer’s Disease (76%), whilst the CQIs showing most substantial variation nationally are for cholinesterase prescription and appointment wait‐times. The Registry has an 11% opt‐out rate, receives 48% of patient/caregiver surveys sent, has published three site and one annual report, and continues to grow.ConclusionThe ADNeT Registry’s early experience is that a clinical quality registry for dementia in Australia is feasible to implement and provides value to participating clinicians. We anticipate that, over time, feedback to clinicians and benchmarking of their data compared to their colleagues’ will drive improvements in diagnostic practices and care. Additional Registry attributes, such as facility to enable research study participation, and expansion of dataset to enable uptake and outcome monitoring of new diagnostics and therapeutics, has made it attractive to governmental, regulatory, professional, consumer and pharmaceutical bodies.