Development of an international Delphi survey to establish core outcome domains for trials in adults with glomerular disease.

Kidney International
Simon A CarterJonathan C Craig

Abstract

Outcomes relevant to treatment decision-making are inconsistently reported in trials involving glomerular disease. Here, we sought to establish a consensus-derived set of critically important outcomes designed to be reported in all future trials by using an online, international two-round Delphi survey in English. To develop this, patients with glomerular disease, caregivers and health professionals aged 18 years and older rated the importance of outcomes using a Likert scale and a Best-Worst scale. The absolute and relative importance was assessed and comments were analyzed thematically. Of 1198 participants who completed Round 1, 734 were patients/caregivers while 464 were health care professionals from 59 countries. Of 700 participants that completed Round 2, 412 were patients/caregivers and 288 were health care professionals. Need for dialysis or transplant, kidney function, death, cardiovascular disease, remission-relapse and life participation were the most important outcomes to patients/caregivers and health professionals. Patients/caregivers rated patient-reported outcomes higher while health care professionals rated hospitalization, death and remission/relapse higher. Four themes explained the reasons for their priorit...Continue Reading

References

May 19, 2006·Journal of Health Economics·Terry N FlynnJoanna Coast
Dec 24, 2010·Kidney International·Debbie S GipsonAaron L Friedman
Jul 14, 2011·Psychology, Health & Medicine·Gabriëlle M N DaleboudtAd A Kaptein
Jan 31, 2012·American Journal of Kidney Diseases : the Official Journal of the National Kidney Foundation·Liang LiTom H Greene
Feb 7, 2012·American Journal of Kidney Diseases : the Official Journal of the National Kidney Foundation·Ann M O'HareDesmond E Williams
Apr 24, 2012·Nephrology, Dialysis, Transplantation : Official Publication of the European Dialysis and Transplant Association - European Renal Association·Desmond Y H YapTak Mao Chan
Jan 17, 2014·Kidney International·Kyla L NaylorAmit X Garg
Sep 25, 2015·The Cochrane Database of Systematic Reviews·Giles WaltersJonathan C Craig
Dec 3, 2015·The New England Journal of Medicine·Thomas RauenUNKNOWN STOP-IgAN Investigators
Jan 9, 2016·American Journal of Kidney Diseases : the Official Journal of the National Kidney Foundation·Anne M MurrayDavid S Knopman
Mar 1, 2016·Kidney International·Taewoo LeePatrick H Nachman
May 18, 2016·Nature Reviews. Disease Primers·Kar Neng LaiRichard J Glassock
Jul 31, 2016·Annals of the Rheumatic Diseases·Eli M MiloslavskyJohn H Stone
Sep 17, 2016·Kidney International·Daniel C Cattran
Nov 1, 2016·Journal of the American Society of Nephrology : JASN·Daniel C CattranUNKNOWN Toronto Glomerulonephritis Registry group
Nov 27, 2016·Lancet·Angela C WebsterPhilip Masson
Feb 28, 2017·American Journal of Kidney Diseases : the Official Journal of the National Kidney Foundation·Nicole EvangelidisUNKNOWN Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Initiative
Mar 23, 2017·JAMA : the Journal of the American Medical Association·Freddie C Hamdy, Jenny L Donovan
Apr 10, 2017·Nephrology, Dialysis, Transplantation : Official Publication of the European Dialysis and Transplant Association - European Renal Association·Jonathan C CraigGiovanni F M Strippoli
Jul 7, 2017·Trials·Paula R WilliamsonBridget Young
Aug 2, 2017·JAMA : the Journal of the American Medical Association·Jicheng LvUNKNOWN TESTING Study Group
Oct 19, 2017·Journal of the American Society of Nephrology : JASN·Thomas RauenJürgen Floege
Nov 7, 2017·Nephrology, Dialysis, Transplantation : Official Publication of the European Dialysis and Transplant Association - European Renal Association·Sean BarbourJagbir Gill
Jun 25, 2018·European Journal of Internal Medicine·Andrea CorsonelloUNKNOWN Screening for Chronic Kidney Disease among Older people across Europe (SCOPE) Study Investigators
Mar 23, 2019·Kidney International·Pietro A CanettaUNKNOWN CureGN Consortium
Apr 12, 2019·Journal of the American Society of Nephrology : JASN·Simon JarrickJonas F Ludvigsson
Aug 7, 2019·Clinical Kidney Journal·Ranjani N Moorthi, Kenzie Latham-Mintus
May 2, 2020·Clinical Journal of the American Society of Nephrology : CJASN·Simon A CarterUNKNOWN SONG-GD Investigators
May 4, 2020·American Journal of Kidney Diseases : the Official Journal of the National Kidney Foundation·Yeoungjee ChoAllison Tong
Jul 14, 2020·American Journal of Kidney Diseases : the Official Journal of the National Kidney Foundation·Charlotte LogemanAllison Tong

❮ Previous
Next ❯

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.

Related Papers

American Journal of Kidney Diseases : the Official Journal of the National Kidney Foundation
Nicole EvangelidisStandardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Initiative
Nephrology, Dialysis, Transplantation : Official Publication of the European Dialysis and Transplant Association - European Renal Association
Emma O'LoneDavid C Wheeler
Nephrology, Dialysis, Transplantation : Official Publication of the European Dialysis and Transplant Association - European Renal Association
Andrea K ViecelliCarmel M Hawley
© 2021 Meta ULC. All rights reserved