The collective impact of rare diseases in Western Australia: an estimate using a population-based cohort.
|dc.identifier.citation||Walker, C. and Mahede, T. and Davis, G. and Miller, L. and Girschik, J. and Brameld, K. and Sun, W. et al. 2016. The collective impact of rare diseases in Western Australia: an estimate using a population-based cohort. Genetics in Medicine.|
PURPOSE: It has been argued that rare diseases should be recognized as a public health priority. However, there is a shortage of epidemiological data describing the true burden of rare diseases. This study investigated hospital service use to provide a better understanding of the collective health and economic impacts of rare diseases. METHODS: Novel methodology was developed using a carefully constructed set of diagnostic codes, a selection of rare disease cohorts from hospital administrative data, and advanced data-linkage technologies. Outcomes included health-service use and hospital admission costs. RESULTS: In 2010, cohort members who were alive represented approximately 2.0% of the Western Australian population. The cohort accounted for 4.6% of people discharged from hospital and 9.9% of hospital discharges, and it had a greater average length of stay than the general population. The total cost of hospital discharges for the cohort represented 10.5% of 2010 state inpatient hospital costs. CONCLUSIONS: This population-based cohort study provides strong new evidence of a marked disparity between the proportion of the population with rare diseases and their combined health-system costs. The methodology will inform future rare-disease studies, and the evidence will guide government strategies for managing the service needs of people living with rare diseases.Genet Med advance online publication 22 September 2016Genetics in Medicine (2016); doi:10.1038/gim.2016.143.
|dc.title||The collective impact of rare diseases in Western Australia: an estimate using a population-based cohort.|
|dcterms.source.title||Genetics in Medicine|
|curtin.department||Centre for Population Health Research|