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