Why creating standardized core outcome sets for chronic kidney disease will improve clinical practice.
Chronic kidney disease (CKD) is common and is associated with increased mortality, morbidity and cost. However, insufficient high-quality trial data are available to answer many relevant clinical questions in this field. In addition, a wide range of variable outcomes are used in studies, and often they are incompletely reported. Furthermore, there is a lack of patient-relevant outcomes, such as mortality, morbidity, quality of life, pain, need for dialysis or costs. Common problems with outcome reporting are as follows: choosing the wrong domains to measure; within domains, choosing the wrong measures (invalid surrogates, composite, non-patient relevant); within measures, choosing the wrong/variable metrics; and within metrics, choosing variable presentation methods. With this article, we aim to underline why standardized outcome reporting is key to achieving evidence-based guidance and improving clinical care for patients; highlight the frameworks available for achieving core outcome sets; and starting from these frameworks, we propose steps needed to develop a core outcome set in the field of CKD. We hope that standardized core outcome sets for nephrology will lead to the most important outcome of guideline production, improving outcomes for our patients.
ERBP, Ghent University Hospital, Ghent, Belgium.|Nephrology Department, Gr. T. Popa University of Medicine and Pharmacy, Iasi, Romania.
Ionut
I
Nistor
ERBP, Ghent University Hospital, Ghent, Belgium.|CNR-IBIM, Clinical Epidemiology and Physiopathology of Renal Diseases and Hypertension, Reggio Calabria, Italy.
Davide
D
Bolignano
ERBP, Ghent University Hospital, Ghent, Belgium.|Department for Internal Medicine III, Nephrology and Hypertension Diseases, Transplantation Medicine and Rheumatology, Krankenhaus Elisabethinen Linz, Linz, Austria.|Center for Medical Statistics, Informatics and Intelligent Systems (CeMSIIS), Section for Clinical Biometrics, Medical University of Vienna, Vienna, Austria.
Maria C
MC
Haller
ERBP, Ghent University Hospital, Ghent, Belgium.|Renal Division, Department of Internal Medicine, Ghent University Hospital, Ghent, Belgium.
Evi
E
Nagler
ERBP, Ghent University Hospital, Ghent, Belgium.|Department of Medical Informatics, Academic Medical Center, Amsterdam, The Netherlands.
Sabine N
SN
van der Veer
ERA-EDTA Registry, Department of Medical Informatics, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.
Kitty
K
Jager
Nephrology Department, Gr. T. Popa University of Medicine and Pharmacy, Iasi, Romania.
Adrian
A
Covic
Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.|Centre for Transplant and Renal Research, Westmead Hospital, Westmead, NSW, Australia.
Angela
A
Webster
ERBP, Ghent University Hospital, Ghent, Belgium.|Renal Division, Department of Internal Medicine, Ghent University Hospital, Ghent, Belgium.
Wim
W
Van Biesen
D006801:Humans; D009398:Nephrology / Q000592:standards*; D010818:Practice Patterns, Physicians' / Q000592:standards*; D011788:Quality of Life; D006435:Renal Dialysis / Q000592:standards*; D051436:Renal Insufficiency, Chronic / Q000628:therapy*; D016896:Treatment Outcome
evidence-based medicine; practice guidelines as topic