@article{3031591,
    title = "Development of an international Delphi survey to establish core outcome
domains for trials in adults with glomerular disease",
    author = "Carter, Simon A. and Logeman, Charlotte and Howell, Martin and Cattran, and Dan and Lightstone, Liz and Bagga, Arvind and Barbour, Sean J. and and Barratt, Jonathan and Boletis, John and Caster, Dawn J. and Coppo, and Rosanna and Fervenza, Fernando C. and Floege, Jurgen and Hladunewich, and Michelle A. and Hogan, Jonathan J. and Kitching, A. Richard and and Lafayette, Richard A. and Malvar, Ana and Radhakrishnan, Jai and Rovin, and Brad H. and Scholes-Robertson, Nicole and Trimarchi, Hernan and Zhang, and Hong and Cho, Yeoungjee and Dunn, Louese and Gipson, Debbie S. and Liew, and Adrian and Sautenet, Benedicte and Viecelli, Andrea K. and Harris, David and and Johnson, David W. and Wang, Angela Yee-Moon and Teixeira-Pinto, and Armando and Alexander, Stephen I. and Martin, Adam and Tong, Allison and and Craig, Jonathan C.",
    journal = "Kidney International",
    year = "2021",
    volume = "100",
    number = "4",
    pages = "881-893",
    publisher = "EXCERPTA MEDICA INC-ELSEVIER SCIENCE INC",
    issn = "0085-2538, 1523-1755",
    doi = "10.1016/j.kint.2021.04.027",
    keywords = "consensus; glomerulonephritis; patient outcome assessment; treatment
outcome; trials",
    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
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."
}