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

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

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish
Number of pages13
JournalKidney International
Early online date5 May 2021
DOIs
Publication statusE-pub ahead of print - 5 May 2021

Keywords

  • consensus
  • glomerulonephritis
  • patient outcome assessment
  • treatment outcome
  • trials

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