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

Care-partners Health-related quality of life Humanistic burden Immunoglobulin A nephropathy Kidney disease

Journal

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
ISSN: 1573-2649
Titre abrégé: Qual Life Res
Pays: Netherlands
ID NLM: 9210257

Informations de publication

Date de publication:
26 Oct 2024
Historique:
accepted: 11 10 2024
medline: 27 10 2024
pubmed: 27 10 2024
entrez: 27 10 2024
Statut: aheadofprint

Résumé

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. 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. 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%). 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.

Identifiants

pubmed: 39461930
doi: 10.1007/s11136-024-03813-x
pii: 10.1007/s11136-024-03813-x
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Subventions

Organisme : Travere Therapeutics, Inc.
ID : Travere Therapeutics, Inc.

Informations de copyright

© 2024. The Author(s).

Références

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Auteurs

Justyna Szklarzewicz (J)

University Hospitals of Leicester NHS Trust, Leicester, UK.

Ute Floege (U)

University Hospital of the RWTH Aachen University, Aachen, Germany.

Daniel Gallego (D)

EKPF European Kidney Patients Federation, FEDERACION ALCER Spanish Kidney Patient Federation, Madrid, Spain.

Keisha Gibson (K)

University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, US.

Kamyar Kalantar-Zadeh (K)

University of California School of Medicine, Irvine, US.

Kelly Helm (K)

NephCure Kidney International, King of Prussia, US.

Dale Robinson (D)

Kidney Research UK, Peterborough, UK.

Bonnie Schneider (B)

The IGA Nephropathy Foundation of America, Wall, US.

Philip Smith (P)

Kidney Research UK, Peterborough, UK.

Kjell Tullus (K)

Great Ormond Street Hospital, London, UK.

Ali Poyan-Mehr (A)

Kaiser Permanente, San Francisco, US.

Bruce Hendry (B)

Travere Therapeutics, 3611 Valley Centre Drive, Suite 300, San Diego, CA, 92130, USA.

Bridget L Balkaran (BL)

Oracle Life Sciences, Austin, US.

Adam K Jauregui (AK)

Oracle Life Sciences, Austin, US.

Aolin Wang (A)

Analysis Group, Boston, US.

Ian Nason (I)

Analysis Group, Boston, US.

Nisha C Hazra (NC)

Analysis Group, Boston, US.

Chunyi Xu (C)

Analysis Group, Boston, US.

Jingyi Liu (J)

Analysis Group, Boston, US.

Zheng-Yi Zhou (ZY)

Analysis Group, Boston, US.

Mark Bensink (M)

Travere Therapeutics, 3611 Valley Centre Drive, Suite 300, San Diego, CA, 92130, USA. mark.bensink@travere.com.

Classifications MeSH