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Abstract: FR-PO663

Defining Immunosuppression Treatment Futility Indicators in Focal Segmental Glomerulosclerosis: A CureGN Study

Session Information

Category: Glomerular Diseases

  • 1303 Glomerular Diseases: Clinical‚ Outcomes‚ and Trials


  • Blazius, Brooke Ann, University of Michigan, Ann Arbor, Michigan, United States
  • Sullivan, Shawn P., University of Michigan, Ann Arbor, Michigan, United States
  • Kallash, Mahmoud, Nationwide Children's Hospital, Columbus, Ohio, United States
  • Kidd, Jason M., Virginia Commonwealth University School of Medicine, Richmond, Virginia, United States
  • Trachtman, Howard, University of Michigan, Ann Arbor, Michigan, United States
  • Scherr, Rebecca, University of Michigan, Ann Arbor, Michigan, United States
  • Carlozzi, Noelle E., University of Michigan, Ann Arbor, Michigan, United States
  • Gipson, Debbie, University of Michigan, Ann Arbor, Michigan, United States

Due to the heterogeneity of focal segmental glomerulosclerosis (FSGS) and potential for immunosuppressive therapy (IST) associated risks or non-responsiveness, decisions to initiate and to stop IST is relevant to practice but not evidence based. Physician perspectives on indicators of IST treatment futility in patients with FSGS at diagnosis (Never Start) and after a period of IST (Permanently Stop).


The study used a modified Delphi approach, including an expert panel of nephrologists to elicit Never Start and Permanently Stop concepts and key population subgroups for whom futility indicators may vary. Responses were coded and combined into futility concepts. An electronic survey was developed to elicit additional futility concepts to rate degree of agreement with each Expert Panel concepts using a Likert scale (strongly disagree to strongly agree), enriched by novel concepts reported by the responder. Survey 1 was distributed to practicing nephrologists via email.


Four domains were elicited from the expert panel: biopsy findings, lab findings, complications/conditions, patient preference. A total of 109 responded to Survey 1. Pre-specified concepts that reached a threshold of 60% agree included 8/25 Never Start concepts and 14/26 Permanently Stop concepts (Fig). An additional six Never Start and six Permanently Stop concepts reached the 60% threshold for agree plus neutral responses and were included in Survey 1.


We found a high degree of conceptual agreement in FSGS IST futility indicators at diagnosis and when discontinuing therapy. Precise indicator thresholds will be confirmed in Survey 2. Future research will compare quantitative assessment of IST practice patterns by physician reported futility concepts at each clinical juncture.


  • NIDDK Support