1 ERAEDTA Registry, Academic Medical Center, University of Amsterdam, Department of Medical Informatics, Amsterdam, The Netherlands and 2 CNRIBIM Clinical Epidemiology and Pathophysiology of Renal Diseases and Hypertension, Renal and Transplantation Unit, Ospedali Riuniti, 89125 Reggio Cal., Italy
Correspondence and offprint requests to: Carmine Zoccali, Ospedali Riuniti, CNR IBIM Clinical Epidemiology and Pathophysiology of Renal Diseases and Hypertension, Renal and Transplantation Unit, Ospedali Riuniti, 89125, 89124 Reggio, Calabria, Italy. Email: carmine.zoccali{at}tin.it
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Why the QUEST initiative? |
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In almost all EU countries, renal registries collecting basic individual patient data on demographics, renal disease, (changes in) treatment modality and survival of RRT patients have been created over the past 1020 years. Their data have shown that both the incidence and prevalence of RRT almost doubled from 1990 to 2003 [from 80 to 141 per million population (pmp) and from 400 to 761 pmp, respectively] [3]. These numbers are expected to rise further over the next few decades. Among others, this is due to the ageing of the general population and an increased prevalence of diabetes mellitus. As a consequence, more older and sicker patients are being admitted to RRT.
Renal registry data have been used for clinical, epidemiological, economic and outcome studies at the national and international level. Their data have proved useful in planning treatment facilities and in providing information on patient outcomes, but nowadays many stakeholders, patients, health authorities and physicians, across Europe and the EU in particular, are demanding information on the quality of RRT care. The issue is of fundamental importance, because it is widely felt that the huge health expenditures that European countries make in RRT demand verification that treatments are delivered according to high standards.
In recent years the European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) has invested substantial resources into the development of evidence-based clinical practice guidelines for RRT patients, the European Best Practice Guidelines (EBPG). Although these guidelines are internationally accepted, it is unknown to what extent nephrologists in the individual centres adhere to them. When such information is widely available, it would show to nephrologists where there is room for them to improve their own centres performance. The need for such information has already been acknowledged by a few registries in Europe and they started to extend their data sets a few years ago. Under the umbrella of ERA-EDTA this initiative is now being boosted by QUality European STudies (QUEST), which joins the forces of a large number of national and regional renal registries and the ERA-EDTA Registry, and the aim of which is to improve RRT patient outcomes by making available information that can be used to improve the quality of RRT care.
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How? |
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The point of selection and standardization of quality of RRT care indicators, based on EBPG and other international practice guidelines, has been addressed by setting up four QUEST Working Groups. Nephrologists with a high level of expertise in different clinical areas of crucial importance in nephrology (anaemia, cardiovascular risk, calciumphosphate metabolism and dialysis adequacy) have expressed their willingness to evaluate potential indicators on different dimensions of their importance, scientific soundness and feasibility of data collection. Standardization with respect to definitions, time of assessment, prefered methods and further specification must further increase the comparability of such indicators.
There is an urgent need for standardized information technology for automated collection and transmission of clinical performance indicators from electronic patient management systems that are secure and compliant with (inter)national data protection legislation. In this respect the developments in the Health Level 7, version 3 (HL7 v3), the international standard for communication in health care, seem promising. A fifth QUEST Working Group will address this topic.
The resulting information on the quality of RRT care must then be reported in such a way that it can feed local quality improvement programmes as well as existing accreditation systems in an effective manner. Therefore reporting techniques and quality improvement techniques are also the subject of investigation in QUEST. Finally, studies on the relationship of clinical performance indicators with outcomes will make it possible to obtain new clinical epidemiologic knowledge, that will in turn contribute to the review of existing guidelines.
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The step forward |
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At the same time, the wealth of information that will become available after implementation of these tools will offer an excellent opportunity to embark on all kinds of collaborative national and European studies.
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References |
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