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Abstract: TH-PO1000

FSGS Minimal Change Disease Patient-Reported Outcome (PRO) Measure Development

Session Information

Category: Glomerular Diseases

  • 1203 Glomerular Diseases: Clinical, Outcomes, and Trials


  • Carlozzi, Noelle E., University of Michigan, Ann Arbor, Michigan, United States
  • Trachtman, Howard, NYU Langone Health, New York, New York, United States
  • Walsh, Liron, Goldfinch Bio, Boston, Massachusetts, United States
  • Massengill, Susan F., Levine Children's Hospital, Charlotte, North Carolina, United States
  • Desmond, Hailey, University of Michigan, Ann Arbor, Michigan, United States
  • Lynam, Chris, Goldfinch Bio, Boston, Massachusetts, United States
  • Gipson, Debbie S., University of Michigan Mott Children's Hospital, Ann Arbor, Michigan, United States

Assessment of how patients feel and function are needed for clinical care and research for focal segmental glomerulosclerosis (FSGS) and treatment-resistant minimal change disease (MCD). The objective of this study was to develop a PRO appropriate for use in children and adults with FSGS and MCD.


Participants (PTS) were recruited from nephrology practices, Kidney Research Network registry and NephCure Kidney International social media. Eligibilty criteria: proteinuria (UPC > 1) within the prior 12 months, eGFR > 30 ml/min and no other severe health condition. Interviews for concept elicitation were conducted in-person for children < 14 yrs and in-person or by phone for > 14 yrs. Interviews were transcribed and reviewed by 2 investigators who developed a hierarchical taxonomy or “codebook” through an ongoing, iterative, deductive and inductive analytical process. Concepts were pooled with those elicited from 30 adults with FSGS participating in the initial FSGS PRO development initiative.


43 interviews with FSGS children (n=11) and adults (n=11), and MCD children (n=8) and adults (n=13) were completed. MCD interviews are ongoing. Latent content analysis suggests FSGS and MCD impact physical, social and mental HRQOL regardless of age or diagnosis. Physical complaints of swelling, fatigue and pain were endorsed by the majority of PTS. PTS described their experiences with medication and associated side effects, as well as lifestyle changes made to manage disease (i.e., diet and medical visits). Interviews often detailed a profound impact on physical abilities and life participation. PTS described the negative impact these symptoms had on their mood and sense of self with a majority of PTS endorsing feelings of anxiety. Depression was common in MCD and about half of expressed feelings of frustration. Finally, PTS with MCD also talked about the toll that frequent and unpredictable relapse had on leisure and work/school activities.


FSGS and MCD can have a profound impact on HRQOL in children and adults. While there is an existing PRO for adults with FSGS, our results suggest that there are commonalities to the FSGS-MCD patient experience that will enable the generation of a disease specific FSGS- MCD PRO for use in children and adults. Measure validation initiatives will be required prior to broad spectrum use.


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