TY - JOUR
TI - Development of an international Delphi survey to establish core outcome
domains for trials in adults with glomerular disease
AU - Carter, Simon A.
AU - Logeman, Charlotte
AU - Howell, Martin
AU - Cattran,
AU - Dan
AU - Lightstone, Liz
AU - Bagga, Arvind
AU - Barbour, Sean J. and
AU - Barratt, Jonathan
AU - Boletis, John
AU - Caster, Dawn J.
AU - Coppo,
AU - Rosanna
AU - Fervenza, Fernando C.
AU - Floege, Jurgen
AU - Hladunewich,
AU - Michelle A.
AU - Hogan, Jonathan J.
AU - Kitching, A. Richard and
AU - Lafayette, Richard A.
AU - Malvar, Ana
AU - Radhakrishnan, Jai
AU - Rovin,
AU - Brad H.
AU - Scholes-Robertson, Nicole
AU - Trimarchi, Hernan
AU - Zhang,
AU - Hong
AU - Cho, Yeoungjee
AU - Dunn, Louese
AU - Gipson, Debbie S.
AU - Liew,
AU - Adrian
AU - Sautenet, Benedicte
AU - Viecelli, Andrea K.
AU - Harris, David
AU - and Johnson, David W.
AU - Wang, Angela Yee-Moon
AU - Teixeira-Pinto,
AU - Armando
AU - Alexander, Stephen I.
AU - Martin, Adam
AU - Tong, Allison and
AU - Craig, Jonathan C.
JO - Kidney International
PY - 2021
VL - 100
TODO - 4
SP - 881-893
PB - EXCERPTA MEDICA INC-ELSEVIER SCIENCE INC
SN - 0085-2538, 1523-1755
TODO - 10.1016/j.kint.2021.04.027
TODO - consensus; glomerulonephritis; patient outcome assessment; treatment
outcome; trials
TODO - 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
priorities: confronting death and compounded suffering, focusing on
specific targets in glomerular disease, preserving meaning in life, and
fostering self-management. Thus, consistent reporting of these
critically important outcomes in all trials involving glomerular disease
is hoped to improve patient-centered decision-making.
ER -