The collective impact of rare diseases in Western Australia: an estimate using a population-based cohort.
MetadataShow full item record
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.
Showing items related by title, author, creator and subject.
Turner, Sian Elizabeth (2009)Background and research questions. The characterization of chronic persistent asthma in an older adult population is not well defined. This is due to the difficulties in separating the diagnosis of asthma from that of ...
Improved diagnosis and care for rare diseases through implementation of precision public health frameworkBaynam, Gareth; Bowman, F.; Lister, K.; Walker, C.; Pachter, N.; Goldblatt, J.; Boycott, K.; Gahl, W.; Kosaki, K.; Adachi, T.; Ishii, K.; Mahede, T.; McKenzie, Fiona; Townshend, S.; Slee, J.; Kiraly-Borri, C.; Vasudevan, A.; Hawkins, A.; Broley, S.; Schofield, L.; Verhoef, H.; Groza, T.; Zankl, A.; Robinson, P.; Haendel, M.; Brudno, M.; Mattick, J.; Dinger, M.; Roscioli, T.; Cowley, M.; Olry, A.; Hanauer, M.; Alkuraya, F.; Taruscio, D.; Posada De La Paz, M.; Lochmüller, H.; Bushby, K.; Thompson, R.; Hedley, V.; Lasko, P.; Mina, K.; Beilby, J.; Tifft, C.; Davis, M.; Laing, N.; Julkowska, D.; Le Cam, Y.; Terry, S.; Kaufmann, P.; Eerola, I.; Norstedt, I.; Rath, A.; Suematsu, M.; Groft, S.; Austin, C.; Draghia-Akli, R.; Weeramanthri, Tarun; Molster, C.; Dawkins, Hugh (2017)© Springer International Publishing AG 2017. Public health relies on technologies to produce and analyse data, as well as effectively develop and implement policies and practices. An example is the public health practice ...
Do acute hospitalised patients in Australia have a different body mass index to the general Australian population: A point prevalence study?Dennis, Diane; Carter, V.; Trevenen, M.; Tyler, J.; Perrella, L.; Lori, E.; Cooper, Ian (2017)© AHHA 2018 Open Access. Objective The aim of the present study was to provide a current snapshot of the body mass index (BMI) of the entire patient cohort of an Australian tertiary hospital on one day and compare these ...