Health-Related Quality of Life in Focal Segmental Glomerular Sclerosis and Minimal Change Disease: A Qualitative Study of Children and Adults to Inform Patient-Reported Outcomes

Abstract Rationale & Objective Assessment of how patients feel and function is needed for clinical care and research for focal segmental glomerulosclerosis (FSGS) and minimal change disease (MCD). The objective of this study was to develop a patient-reported outcome assessment appropriate for use in children and adults with FSGS and MCD. Study Design Qualitative study using semi-structured interviews Setting & Participants 48 semi-structured interviews with children age 8-17 years (n=11) and adults (n=10) with FSGS, and children age 8-17 (n=11) and adults (n=16) with MCD recruited from three academic medical centers Analytical Approach Latent content analysis Results FSGS and MCD have a pervasive and comparable impact on physical, social and mental health-related quality of life regardless of age or diagnosis. Physical complaints of swelling, fatigue and pain were articulated by the majority of participants. Disease management was also a frequent topic of discussion; participants described their experiences with medication and associated side effects, as well as lifestyle changes made in order to manage their disease (i.e., dietary changes and frequent medical appointments). These discussions often identified a profound impact on physical abilities and life participation. In many instances, participants described the negative impact these symptoms had on their mood and sense of self with a majority of participants reporting feelings of anxiety. Limitations Participants were primarily non-Hispanic white and English speaking, which may limit generalizability. Conclusions Our results suggest that there are commonalities to the FSGS-MCD patient experience of health-related quality of life that will enable the generation of a disease specific FSGS-MCD patient-reported outcomes instrument for use in children and adults. The development of this tool is intended to facilitate better care and support clinical research for these individuals.