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Abstract: SA-PO699

The Humanistic Burden of Rare Kidney Diseases, Understanding the Impact of Focal Segmental Glomerulosclerosis and IgA Nephropathy on Patients and Caregivers Study (HONUS): Preliminary Results for IgA Nephropathy in the United States

Session Information

Category: Glomerular Diseases

  • 1303 Glomerular Diseases: Clinical‚ Outcomes‚ and Trials


  • Szklarzewicz, Justyna, Leicester General Hospital, Leicester, Leicester, United Kingdom

Group or Team Name

  • On behalf of HONUS Advisory and Study team members.

While immunoglobulin A nephropathy (IgAN) has been shown to be associated with significant clinical and economic burden, less is known about the humanistic burden associated with the disease. The HONUS study aims to quantify the humanistic burden of rare kidney diseases, including IgAN.


HONUS is a multi-national, cross-sectional survey among adult patients, caregivers (care-partners) and parents/care-partners of youth (8-17 years) with focal segmental glomerulosclerosis (FSGS) or IgAN. Information on demographic/clinical characteristics, health-related quality of life (HRQoL, 12-Item Short Form Survey [SF-12]) and disease impact on employment (Work Productivity and Activity Impairment [WPAI]) are being collected. The current analysis focused on information gathered from IgAN adult patients and their care-partners in the US by May 2022. Data were analyzed descriptively.


The analysis included 89 adult IgAN patients. Most of them were Caucasian (88%) and 52% were female, with mean age of 37 years. Most patients (67%) were in CKD stage 3/4, and 3% in end-stage renal disease and had received transplant. Commonly reported comorbidities include hypertension (26%), anemia (22%), and depression (17%). The mean SF-12 physical and mental component scores (PCS, MCS) for patients were 46.7 and 39.3, respectively, lower (reflecting worse HRQoL) than previously published mean scores (MCS and PCS of 50) for the US general population. Employed patients (n=63 [71%]) reported 7% absenteeism, 30% presenteeism, 34% overall work productivity loss, and 39% activity impairment due to IgAN-related reasons. Most of the paired care-partners were the patients’ partners (89%), with mean age of 39 years. Among them, the mean SF-12 PCS and MCS were 49.9 and 41.5, respectively. The employed care-partners (n=85 [96%]) reported 12% absenteeism, 32% presenteeism, 39% overall work productivity loss, and 37% activity impairment due to IgAN-related reasons.


With US general population estimates as a reference, patients with IgAN experience impaired HRQoL and productivity, which also impacts their care-partner’s mental health and productivity.


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