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Abstract: PO1643

DEFINE Physicians: An International Delphi Survey to Identify Consensus in the Care of Patients with FSGS or Idiopathic Nephrotic Syndrome

Session Information

Category: Glomerular Diseases

  • 1203 Glomerular Diseases: Clinical, Outcomes, and Trials


  • Vivarelli, Marina, Bambino Gesù Pediatric Hospital Istituto di Ricerca e Cura a Carattere Scientifico (IRCCS), Rome, Italy
  • Gibson, Keisha L., School of Medicine, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States
  • Gipson, Debbie S., University of Michigan, Ann Arbor, Michigan, United States
  • Praga, Manuel, Complutense University, Investigation Institute Hospital 12 de Octubre, Madrid, Spain
  • Reich, Heather N., University Health Network and University of Toronto, Toronto, Ontario, Canada
  • Schreuder, Michiel F., Amalia Children's Hospital, Radboud Institute for Molecular Life Sciences, Radboud University Medical Center, Nijmegen, Netherlands
  • Tesar, Vladimir, Charles University, Prague, Czechia
  • Tonelli, Marcello, University of Calgary Cumming School of Medicine, Calgary, Alberta, Canada
  • Wetzels, Jack F., Radboud University Medical Center, Nijmegen, Netherlands
  • Radhakrishnan, Jai, Columbia University Medical Center, New York, New York, United States
  • Floege, Jürgen, Rheinisch-Westfälische Technische Hochschule Aachen, Aachen, Germany

The extent to which real-world practice aligns with guidelines for management of focal segmental glomerulosclerosis (FSGS) and pediatric idiopathic nephrotic syndrome (INS) is unknown. The DEFINE: Physicians project sought to describe physicians’ opinions on the pathophysiology and optimal management of FSGS/INS in real-world settings.


DEFINE: Physicians was a 2-round Delphi survey that recruited nephrologists from North America and Europe. A total of 22 FSGS/INS statements were scored using a 1-9 Likert scale (9=strongly agree). Consensus was defined as median and mean score ≥7, and ≥75% of participants scoring agreement (ie, score 7-9). Statements not achieving high consensus (≥90% agreement) in Round 1 were revised and retested in Round 2.


This study involved 207 adult and pediatric nephrologists. Median clinical experience was 18 (range 5-49) years; 103 participants (50%) worked in nonacademic settings. In Round 1, 21 statements met consensus criteria and 7 statements not achieving high consensus were revised or divided into multiple parts, creating 11 revised statements for testing in Round 2. In Round 2, 9 of 11 statements met at least moderate consensus. Round 1 statements with high consensus described prognostic significance of proteinuria and disease management (Figure 1). Controversial statements retested in Round 2 pertained to distinction between primary and secondary FSGS in adults, and to management of frequently relapsing INS in children (Figure 2).


The level of consensus in this Delphi survey was high for statements on treatment decisions and the importance of proteinuria control. The main area where high consensus was not reached pertained to differentiation between primary and secondary FSGS and managing frequently relapsing INS in children, suggesting that these areas require further research.

Figure 1

Figure 2


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