TY - JOUR
T1 - The end rheumatic heart disease in Australia study of epidemiology (ERASE) project
T2 - Data sources, case ascertainment and cohort profile
AU - Katzenellenbogen, Judith M.
AU - Bond-Smith, Daniela
AU - Seth, Rebecca J.
AU - Dempsey, Karen
AU - Cannon, Jeffrey
AU - Nedkoff, Lee
AU - Sanfilippo, Frank M.
AU - de Klerk, Nicholas
AU - Hung, Joe
AU - Geelhoed, Elizabeth
AU - Williamson, Daniel
AU - Wyber, Rosemary
AU - Ralph, Anna P.
AU - Bessarab, Dawn
PY - 2019/11/15
Y1 - 2019/11/15
N2 - Purpose: Acute rheumatic fever (ARF) and rheumatic heart disease (RHD) persist as public health issues in developing countries and among disadvantaged communities in high-income countries, with rates in Aboriginal and Torres Strait Islander peoples in Australia among the highest recorded globally. A robust evidence base is critical to support policy recommendations for eliminating RHD, but available data are fragmented and incomplete. The End RHD in Australia: Study of Epidemiology (ERASE) Project aims to provide a comprehensive database of ARF and RHD cases in Australia as a basis for improved monitoring and to assess prevention and treatment strategies. The objective of this paper is to describe the process for case ascertainment and profile of the study cohort. Patients and methods: The ERASE database has been built using linked administrative data from RHD registers, inpatient hospitalizations, and death registry data from 2001 to 2017 (mid-year). Additional linked datasets are available. The longitudinal nature of the data is harnessed to estimate onset and assess the progression of the disease. To accommodate systematic limitations in diagnostic coding for RHD, hospital-only identified RHD has been determined using a purposefully developed prediction model. Results: Of 132,053 patients for whom data were received, 42,064 are considered true cases of ARF or RHD in the study period. The patient population under 60 years in the compiled dataset is more than double the number of patients identified in ARF/RHD registers (12,907 versus 5049). Non-registered patients were more likely to be older, non-Indigenous, and at a later disease stage. Conclusion: The ERASE Project has created an unprecedented linked administrative database on ARF and RHD in Australia. These data provide a critical baseline for efforts to end ARF/RHD in Australia. The methodological work conducted to compile this database resulted in significant improvements in the robustness of epidemiological estimates and entails valuable lessons for ARF/RHD research globally.
AB - Purpose: Acute rheumatic fever (ARF) and rheumatic heart disease (RHD) persist as public health issues in developing countries and among disadvantaged communities in high-income countries, with rates in Aboriginal and Torres Strait Islander peoples in Australia among the highest recorded globally. A robust evidence base is critical to support policy recommendations for eliminating RHD, but available data are fragmented and incomplete. The End RHD in Australia: Study of Epidemiology (ERASE) Project aims to provide a comprehensive database of ARF and RHD cases in Australia as a basis for improved monitoring and to assess prevention and treatment strategies. The objective of this paper is to describe the process for case ascertainment and profile of the study cohort. Patients and methods: The ERASE database has been built using linked administrative data from RHD registers, inpatient hospitalizations, and death registry data from 2001 to 2017 (mid-year). Additional linked datasets are available. The longitudinal nature of the data is harnessed to estimate onset and assess the progression of the disease. To accommodate systematic limitations in diagnostic coding for RHD, hospital-only identified RHD has been determined using a purposefully developed prediction model. Results: Of 132,053 patients for whom data were received, 42,064 are considered true cases of ARF or RHD in the study period. The patient population under 60 years in the compiled dataset is more than double the number of patients identified in ARF/RHD registers (12,907 versus 5049). Non-registered patients were more likely to be older, non-Indigenous, and at a later disease stage. Conclusion: The ERASE Project has created an unprecedented linked administrative database on ARF and RHD in Australia. These data provide a critical baseline for efforts to end ARF/RHD in Australia. The methodological work conducted to compile this database resulted in significant improvements in the robustness of epidemiological estimates and entails valuable lessons for ARF/RHD research globally.
KW - Epidemiology
KW - Indigenous
KW - Linked data
KW - Rheumatic fever
KW - Rheumatic heart disease
UR - http://www.scopus.com/inward/record.url?scp=85075433597&partnerID=8YFLogxK
U2 - 10.2147/CLEP.S224621
DO - 10.2147/CLEP.S224621
M3 - Article
C2 - 31814772
AN - SCOPUS:85075433597
SN - 1179-1349
VL - 11
SP - 997
EP - 1010
JO - Clinical Epidemiology
JF - Clinical Epidemiology
ER -