TY - JOUR
T1 - Availability, coverage, and scope of health information systems for kidney care across world countries and regions
AU - See, Emily J.
AU - Bello, Aminu K.
AU - Levin, Adeera
AU - Lunney, Meaghan
AU - Osman, Mohamed A.
AU - Ye, Feng
AU - Ashuntantang, Gloria E.
AU - Bellorin-Font, Ezequiel
AU - Benghanem Gharbi, Mohammed
AU - Davison, Sara
AU - Ghnaimat, Mohammad
AU - Harden, Paul
AU - Htay, Htay
AU - Jha, Vivekanand
AU - Kalantar-Zadeh, Kamyar
AU - Kerr, Peter G.
AU - Klarenbach, Scott
AU - Kovesdy, Csaba P.
AU - Luyckx, Valerie
AU - Neuen, Brendon
AU - O'Donoghue, Donal
AU - Ossareh, Shahrzad
AU - Perl, Jeffrey
AU - Rashid, Harun Ur
AU - Rondeau, Eric
AU - Syed, Saad
AU - Sola, Laura
AU - Tchokhonelidze, Irma
AU - Tesar, Vladimir
AU - Tungsanga, Kriang
AU - Kazancioglu, Rumeyza Turan
AU - Wang, Angela Yee Moon
AU - Yang, Chih Wei
AU - Zemchenkov, Alexander
AU - Zhao, Ming Hui
AU - Jager, Kitty J.
AU - Caskey, Fergus
AU - Perkovic, Vlado
AU - Jindal, Kailash K.
AU - Okpechi, Ikechi G.
AU - Tonelli, Marcello
AU - Feehally, John
AU - Harris, David C.
AU - Johnson, David W.
N1 - Funding Information: This work was supported by the ISN (grant RES0033080 to the University of Alberta). Publisher Copyright: © 2020 The Author(s) 2020. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.
PY - 2022/1/1
Y1 - 2022/1/1
N2 - Background: Health information systems (HIS) are fundamental tools for the surveillance of health services, estimation of disease burden and prioritization of health resources. Several gaps in the availability of HIS for kidney disease were highlighted by the first iteration of the Global Kidney Health Atlas. Methods: As part of its second iteration, the International Society of Nephrology conducted a cross-sectional global survey between July and October 2018 to explore the coverage and scope of HIS for kidney disease, with a focus on kidney replacement therapy (KRT). Results: Out of a total of 182 invited countries, 154 countries responded to questions on HIS (85% response rate). KRT registries were available in almost all high-income countries, but few low-income countries, while registries for non-dialysis chronic kidney disease (CKD) or acute kidney injury (AKI) were rare. Registries in high-income countries tended to be national, in contrast to registries in low-income countries, which often operated at local or regional levels. Although cause of end-stage kidney disease, modality of KRT and source of kidney transplant donors were frequently reported, few countries collected data on patient-reported outcome measures and only half of low-income countries recorded process-based measures. Almost no countries had programs to detect AKI and practices to identify CKD-targeted individuals with diabetes, hypertension and cardiovascular disease, rather than members of high-risk ethnic groups. Conclusions: These findings confirm significant heterogeneity in the global availability of HIS for kidney disease and highlight important gaps in their coverage and scope, especially in low-income countries and across the domains of AKI, non-dialysis CKD, patient-reported outcomes, process-based measures and quality indicators for KRT service delivery.
AB - Background: Health information systems (HIS) are fundamental tools for the surveillance of health services, estimation of disease burden and prioritization of health resources. Several gaps in the availability of HIS for kidney disease were highlighted by the first iteration of the Global Kidney Health Atlas. Methods: As part of its second iteration, the International Society of Nephrology conducted a cross-sectional global survey between July and October 2018 to explore the coverage and scope of HIS for kidney disease, with a focus on kidney replacement therapy (KRT). Results: Out of a total of 182 invited countries, 154 countries responded to questions on HIS (85% response rate). KRT registries were available in almost all high-income countries, but few low-income countries, while registries for non-dialysis chronic kidney disease (CKD) or acute kidney injury (AKI) were rare. Registries in high-income countries tended to be national, in contrast to registries in low-income countries, which often operated at local or regional levels. Although cause of end-stage kidney disease, modality of KRT and source of kidney transplant donors were frequently reported, few countries collected data on patient-reported outcome measures and only half of low-income countries recorded process-based measures. Almost no countries had programs to detect AKI and practices to identify CKD-targeted individuals with diabetes, hypertension and cardiovascular disease, rather than members of high-risk ethnic groups. Conclusions: These findings confirm significant heterogeneity in the global availability of HIS for kidney disease and highlight important gaps in their coverage and scope, especially in low-income countries and across the domains of AKI, non-dialysis CKD, patient-reported outcomes, process-based measures and quality indicators for KRT service delivery.
KW - chronic kidney disease
KW - end-stage kidney disease
KW - health information systems
KW - kidney replacement therapy
KW - registries
UR - http://www.scopus.com/inward/record.url?scp=85111400892&partnerID=8YFLogxK
U2 - https://doi.org/10.1093/ndt/gfaa343
DO - https://doi.org/10.1093/ndt/gfaa343
M3 - Article
C2 - 33351951
SN - 0931-0509
VL - 37
SP - 159
EP - 167
JO - Nephrology, dialysis, transplantation
JF - Nephrology, dialysis, transplantation
IS - 1
M1 - gfaa343
ER -