Journal article
The collective impact of rare diseases in Western Australia: an estimate using a population-based cohort
Genetics in Medicine, Vol.19(5), pp.546-552
2017
Abstract
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.
Details
- Title
- The collective impact of rare diseases in Western Australia: an estimate using a population-based cohort
- Authors/Creators
- C.E. Walker (Author/Creator) - Government of Western AustraliaT. Mahede (Author/Creator) - Government of Western AustraliaG. Davis (Author/Creator) - Government of Western AustraliaL.J. Miller (Author/Creator) - Government of Western AustraliaJ. Girschik (Author/Creator) - Government of Western AustraliaK. Brameld (Author/Creator) - Curtin UniversityW. Sun (Author/Creator) - Government of Western AustraliaA. Rathod (Author/Creator)S. Ayme (Author/Creator) - InsermS.R. Zubrick (Author/Creator) - The University of Western AustraliaG.S. Baynam (Author/Creator) - Government of Western AustraliaC. Molster (Author/Creator) - Government of Western AustraliaH.J.S. Dawkins (Author/Creator)T.S. Weeramanthri (Author/Creator) - Government of Western Australia
- Publication Details
- Genetics in Medicine, Vol.19(5), pp.546-552
- Publisher
- Lippincott Williams & Wilkins
- Identifiers
- 991005541221207891
- Copyright
- © 2017 American College of Medical Genetics and Genomics
- Murdoch Affiliation
- Institute for Immunology and Infectious Diseases
- Language
- English
- Resource Type
- Journal article
UN Sustainable Development Goals (SDGs)
This output has contributed to the advancement of the following goals:
Source: InCites
Metrics
235 File views/ downloads
310 Record Views
InCites Highlights
These are selected metrics from InCites Benchmarking & Analytics tool, related to this output
- Collaboration types
- Domestic collaboration
- International collaboration
- Citation topics
- 1 Clinical & Life Sciences
- 1.155 Medical Ethics
- 1.155.1510 Orphan Drugs
- Web Of Science research areas
- Genetics & Heredity
- ESI research areas
- Clinical Medicine