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Carter, Simon A.; Logeman, Charlotte; Howell, Martin; Cattran, Dan; Lightstone, Liz; Bagga, Arvind; Barbour, Sean J.; Barratt, Jonathan; Boletis, John; Caster, Dawn J.; Coppo, Rosanna; Fervenza, Fernando C.; Floege, Jürgen; Hladunewich, Michelle A.; Hogan, Jonathan J.; Kitching, A. Richard; Lafayette, Richard A.; Malvar, Ana; Radhakrishnan, Jai; Rovin, Brad H.; Scholes-Robertson, Nicole; Trimarchi, Hérnan; Zhang, Hong; Cho, Yeoungjee; Dunn, Louese; Gipson, Debbie S.; Liew, Adrian; Sautenet, Benedicte; Viecelli, Andrea K.; Harris, David; Johnson, David W.; Wang, Angela Yee-Moon; Teixeira-Pinto, Armando; Alexander, Stephen I.; Martin, Adam; Tong, Allison; Craig, Jonathan C.
Kidney international, October 2021, 2021-10-00, 20211001, Volume: 100, Issue: 4Journal Article
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. Display omitted
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