Research Article: Development of a Conceptual Model for the Patient Experience of Focal Segmental Glomerulosclerosis (FSGS): A Qualitative Targeted Literature Review
Abstract:
Focal segmental glomerulosclerosis (FSGS) is a leading cause of kidney disease and can progress to end stage kidney disease (ESKD). An overview of symptoms and impacts of the disease experienced will help inform the selection or development of fit-for-purpose clinical outcome assessments (COA) to be used in FSGS clinical trials. This study aimed to develop a conceptual model (CM) of the adult and pediatric patient experience of FSGS including disease signs/symptoms, treatment side-effects, and impact on functioning and wellbeing.
Introduction:
Focal segmental glomerulosclerosis (FSGS) is a leading cause of kidney disease and can progress to end stage kidney disease (ESKD) [1]. Characterized by histopathologic lesions which develop in the glomeruli, patients with FSGS often present with nephrotic syndrome, before FSGS is diagnosed through kidney biopsy [2]. FSGS accounts for approximately 40% of adults with nephrotic syndrome (NS) [3] and approximately 20% of cases of NS in children. Reviews suggest the incidence of FSGS in the US may range from 1.4 to…
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