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 aged 8 to 17 years (n = 11) and adults (n = 10) with FSGS and children aged 8 to 17 (n = 11) and adults (n = 16) with MCD recruited from 3 academic medical centers.

Analytical approach

Latent content analysis.

Results

FSGS and MCD have a pervasive and comparable impact on physical, social, and mental

SUBMITTER: Carlozzi NE 

PROVIDER: S-EPMC8350833 | biostudies-literature | 2021 Jul-Aug

REPOSITORIES: biostudies-literature