Evidence map›Paper›PMID 39461930›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2025

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

Justyna Szklarzewicz, Ute Floege, Daniel Gallego, Keisha Gibson, Kamyar Kalantar-Zadeh, Kelly Helm, Dale Robinson, Bonnie Schneider, Philip Smith, Kjell Tullus and 11 more

Abstract read
In one paragraph

Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed.

  1. IgA nephropathy management: what does the future hold?Kidney international supplements · 2026
    Review
  2. Review
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  5. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

21 authors.

Justyna SzklarzewiczUniversity Hospitals of Leicester NHS Trust, Leicester, UK.
Ute FloegeUniversity Hospital of the RWTH Aachen University, Aachen, Germany.
Daniel GallegoEKPF European Kidney Patients Federation, FEDERACION ALCER Spanish Kidney Patient Federation, Madrid, Spain.
Keisha GibsonUniversity of North Carolina at Chapel Hill School of Medicine, Chapel Hill, US.
Kamyar Kalantar-ZadehUniversity of California School of Medicine, Irvine, US.
Kelly HelmNephCure Kidney International, King of Prussia, US.
Dale RobinsonKidney Research UK, Peterborough, UK.
Bonnie SchneiderThe IGA Nephropathy Foundation of America, Wall, US.
Philip SmithKidney Research UK, Peterborough, UK.
Kjell TullusGreat Ormond Street Hospital, London, UK.
Ali Poyan-MehrKaiser Permanente, San Francisco, US.
Bruce HendryTravere Therapeutics, 3611 Valley Centre Drive, Suite 300, San Diego, CA, 92130, USA.
Bridget L BalkaranOracle Life Sciences, Austin, US.
Adam K JaureguiOracle Life Sciences, Austin, US.
Aolin WangAnalysis Group, Boston, US.
Ian NasonAnalysis Group, Boston, US.
Nisha C HazraAnalysis Group, Boston, US.
Chunyi XuAnalysis Group, Boston, US.
Jingyi LiuAnalysis Group, Boston, US.
Zheng-Yi ZhouAnalysis Group, Boston, US.
Mark BensinkTravere Therapeutics, 3611 Valley Centre Drive, Suite 300, San Diego, CA, 92130, USA. mark.bensink@travere.com.ORCID http://orcid.org/0000-0002-5940-7898

Funding

Travere Therapeutics, Inc. Travere Therapeutics, Inc.
6 · The paper itself

Abstract

purposeThis 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.

methodsHRQoL 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.

results117 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%).

conclusionUS 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.

Indexed as

Cost of IllnessGlomerulonephritis, IGAQuality of LifeAdultAnxietyCross-Sectional StudiesDepressionFemaleHumansMaleMiddle AgedSurveys and QuestionnairesUnited StatesCare-partnersHealth-related quality of lifeHumanistic burdenImmunoglobulin A nephropathyKidney disease

Identifiers

PMID39461930
PMCPMC11865151

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.