QUality European STudies (QUEST)–a step forward in the quality of RRT care

Kitty J. Jager1 and Carmine Zoccali2

1 ERA–EDTA Registry, Academic Medical Center, University of Amsterdam, Department of Medical Informatics, Amsterdam, The Netherlands and 2 CNR–IBIM 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



   Why the QUEST initiative?
 Top
 Why the QUEST initiative?
 How?
 The step forward
 References
 
The survival of end-stage renal disease (ESRD) patients depends on extremely expensive and highly complex medical treatments. Although renal replacement therapy (RRT) is life-saving, its cost is reason for increasing concern. Indeed, in Western countries patients on RRT, who represent a small segment of the general population (i.e. 0.1%), absorb about 2–3% of the health care budget [1]. The risk of death of an RRT patient, in particular the risk of cardiovascular death, remains much higher than that of an individual of the same age and gender without ESRD [2]. The costs of illness to society in terms of medical costs, decreased life expectancy, increased morbidity, decreased quality of life and inability to work are therefore substantial.

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 10–20 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.



   How?
 Top
 Why the QUEST initiative?
 How?
 The step forward
 References
 
The development of registries towards sources of high quality clinical data capable of acting as important quality control and of improvement tools has been hampered by the use of work intensive data collection methods. Some registries have tried to solve this problem by implementing automated data extraction methods directly from electronic patients records, thus reducing the workload in the hospitals that mostly provide the data on a voluntary basis. They have shown that, where electronic patient management systems are available, this method is feasible and has important potential to derive high quality clinical data. In most EU countries, however, these techniques are still in development and they are spreading slowly. Besides, the international comparison of clinical performance indicators has been complicated by the lack of standards for their measurement. From the European perspective there exists therefore an urgent need to standardize such indicators.

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, calcium–phosphate 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.



   The step forward
 Top
 Why the QUEST initiative?
 How?
 The step forward
 References
 
QUEST is an ambitious initiative aiming to reach medium and long term goals in the area of quality improvement in RRT. The development of standard methods and tools described earlier is an absolute prerequisite to reach those goals. The availability of information on clinical performance indicators will increase the transparency of RRT care, lay the foundation for national and international benchmarking and provide inputs for local quality improvement initiatives and accreditation systems, whereas at present only a limited number of countries collect different indicators.

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.



   References
 Top
 Why the QUEST initiative?
 How?
 The step forward
 References
 

  1. De Vecchi AF, Dratwa M, Wiedemann ME. Healthcare systems and end-stage renal disease (ESRD) therapies–an international review: costs and reimbursement/funding of ESRD therapies. Nephrol Dial Transplant 1999; 14 [Suppl 6]: 31–41
  2. Levey AS, Beto JA, Coronado BE et al. Controlling the epidemic of cardiovascular disease in chronic renal disease: what do we know? What do we need to learn? Where do we go from here? National Kidney Foundation Task Force on Cardiovascular Disease. Am J Kidney Dis 1998; 32: 853–906[ISI][Medline]
  3. ERA-EDTA Registry: ERA-EDTA Registry 2003 Annual Report. Academic Medical Center, Amsterdam, The Netherlands, May 2005




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