The humanistic burden of immunoglobulin A nephropathy on patients and care-partners in the United States.

Purpose: This cross-sectional survey study quantified the humanistic burden of immunoglobulin A nephropathy (IgAN), in terms of physical and mental health-related quality of life (HRQoL) and work productivity, among adults with primary IgAN and their care-partners.
Methods: HRQoL was assessed (01/31/22 - 05/31/23) with validated tools including the KDQoL-36 (with SF-12), GAD-7 (anxiety), PHQ-9 (depression), and WPAI: SHP (work productivity). Participant characteristics and total/domain scores were summarized; selected outcomes were compared to an external, kidney disease-free cohort.
Results: 117 adults with IgAN and their care-partner pairs, and one adult without a care-partner, were included. The mean ages of patients and care-partners were 38.0 (SD: 8.6) and 40.2 (11.8) years, respectively; 55.9% and 43.6% were female. Mean physical and mental SF-12 scores for patients were 46.7 (SD: 8.0) and 41.9 (9.2), respectively, and 50.7 (7.3) and 43.7 (10.24) for care-partners. Both SF-12 components for patients, and the mental component for care-givers, were significantly worse compared to the US general population. Among patients, 27.1% had moderate/severe anxiety and 49.2% reported at least moderate depression. Compared to external controls, patients experienced significantly higher severity of anxiety (6.6 vs. 5.4) and depression (8.1 vs. 6.6; both p < 0.0001). Among care-partners, 13.7% experienced moderate anxiety and 37.8% experienced moderate/moderately-severe depression. Among employed individuals, both groups reported IgAN-related absenteeism (8.8-9.4%), presenteeism (25.1-25.9%), and overall work impairment (30.4-30.5%).
Conclusion: US adults with IgAN and their care partners experience impairments to mental and physical HRQoL and heightened levels of depression and anxiety, underscoring the need for effective IgAN therapies and care-partner support.
Competing Interests: Declarations. Ethics approval: The survey and all associated patient-facing materials were granted an exemption from full review by the Pearl Institutional Review Board on June 21, 2021, and the study is compliant with the Health Insurance Portability and Accountability Act and Declaration of Helsinki. Consent to participate: Informed consent was obtained from all individual participants included in the study. Competing interests: Bruce Hendry is an employee of Travere Therapeutics, Inc. and holds stock/options. Mark Bensink is Managing Director of Benofit Consulting, which received consulting fees from Travere Therapeutics, Inc. for this work. Justyna Szklarzewicz, Ute Floege, Daniel Gallego, Keisha Gibson, Kamyar Kalantar-Zadeh, Kelly Helm, Dale Robinson, Bonnie Schneider, Philip Smith, Kjell Tullus, and Ali Poyan-Mehr received consultancy fees from Travere Therapeutics, Inc. for this work. Bridget L Balkaran and Adam K Jauregui are employees of Oracle Life Sciences, which received consultancy fees from Travere Therapeutics, Inc. for this work. Jingyi Liu, Chunyi Xu, Ian Nason, Aolin Wang, Nisha C. Hazra and Zheng-Yi Zhou are employees of Analysis Group, which received consultancy fees from Travere Therapeutics, Inc. for this work.
(© 2024. The Author(s).)