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

Development of an international Delphi survey to establish core outcome domains for trials in adults with glomerular disease. Kidney international Carter, S. A., Logeman, C. n., Howell, M. n., Cattran, D. n., Lightstone, L. n., Bagga, A. n., Barbour, S. J., Barratt, J. n., Boletis, J. n., Caster, D. J., Coppo, R. n., Fervenza, F. C., Floege, J. n., Hladunewich, M. A., Hogan, J. J., Kitching, A. R., Lafayette, R. A., Malvar, A. n., Radhakrishnan, J. n., Rovin, B. H., Scholes-Robertson, N. n., Trimarchi, H. n., Zhang, H. n., Cho, Y. n., Dunn, L. n., Gipson, D. S., Liew, A. n., Sautenet, B. n., Viecelli, A. K., Harris, D. n., Johnson, D. W., Yee-Moon Wang, A. n., Teixeira-Pinto, A. n., Alexander, S. I., GradCert, A. M., Tong, A. n., Craig, J. C. 2021

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 healthcare professionals from 59 countries. Of 700 participants that completed Round 2, 412 were patients/caregivers and 288 were healthcare 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 healthcare 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.

View details for DOI 10.1016/j.kint.2021.04.027

View details for PubMedID 33964313