The Humanistic Burden of Immunoglobulin A Nephropathy on Patients and Care-Partners in The United States
Topics: Nephrology IgAN Non-product Observational Publication Summary
Szklarzewicz J, Floege U, Gallego D et al.
10.1007/s11136-024-03813-x
Summary
Exploring the burden of chronic kidney disease (CKD) in patients with IgA nephropathy and their care-partners1
Background
IgA nephropathy is a progressive, rare disease and a major contributor to the global burden of chronic kidney disease (CKD), often leading to kidney failure.1-6
The humanistic burden of IgA nephropathy on care-partners and patients remains important to explore, particularly regarding mental and physical health-related quality of life (HRQoL) and work productivity.1
Aim
This study aimed to quantify the burden of CKD in adult patients with IgA nephropathy and their care-partners in the United States (US).1
Approach
IgA nephropathy data from the HONUS (Humanistic Burden of Rare KidNey Diseases: Understanding the impact of FSGS and IgAN on Patients and Caregivers Study) cross-sectional survey conducted from January 2022 to May 2023 was used.1
Adults with IgA nephropathy and their care-partners completed validated assessments of HRQoL, anxiety, depression, and work productivity.1
Comparative analyses were conducted against a matched external control group from the US general population.1
Findings
IgA nephropathy was associated with impaired quality of life, mental health burden, and emotional strain in both patients and their care-partners.1
Patients had lower scores than the general US population for both physical HRQoL (46.7 vs. 50.0) and mental HRQoL (41.9 vs. 50.0).1,7 Care-partners also reported reduced mental HRQoL compared with the general US population (43.7 vs. 50.0).1,7
Among patients, anxiety and depression scores were significantly higher than controls (P<0.0001)1:
- 27.1% had moderate or severe anxiety
- 49.2% had at least moderate depression
Among care-partners, 13.7% reported moderate anxiety and 37.8% had moderate to moderately-severe depression.1
Fear and uncertainty about the future due to IgA nephropathy were reported by 96.6% of patients and 99.2% of care-partners.1
Patients and care-partners with IgA nephropathy experienced functional limitations.1
Overall work impairment related to IgA nephropathy was 30.5% and 30.4% for employed patients and their care-partners, respectively.1
Activity impairment affected 34.0% of patients and 29.2% of care-partners.1
Lower back pain, constipation, and bone or joint pain were the top three most burdensome symptoms reported by patients with IgA nephropathy.1
Key takeaway
The burden of kidney disease in IgA nephropathy extends beyond clinical outcomes, deeply affecting mental health, daily functioning, and productivity in both patients and their care-partners, highlighting the need for effective therapies and care-partner support.1
Footnotes
CKD, chronic kidney disease; HRQoL, health-related quality of life; IgAN, immunoglobulin A nephropathy; US, United States.
- Szklarzewicz J et al. Qual Life Res. 2025;34(2):353-363.
- Wyatt RJ and Julian BA. N Engl J Med. 2013;368(25):2402-2414.
- Kwon CS et al. J Health Econ Outcomes Res. 2021;8(2):36-45.
- Nair R and Walker PD. Kidney Int. 2006;69(8):1455-1458.
- Xie J et al. PLoS One. 2012;7(6):e38904.
- Donadio JV and Grande JP. N Engl J Med. 2002;347(10):738-748.
- Ware JE. Spine. 2000;25(24):3130–3139.
MA-DS-25-0058 | July 2025