The humanistic burden of immunoglobulin A nephropathy on patients and care-partners in the United States.
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| Title: | The humanistic burden of immunoglobulin A nephropathy on patients and care-partners in the United States. |
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| Authors: | Szklarzewicz, Justyna (AUTHOR), Floege, Ute (AUTHOR), Gallego, Daniel (AUTHOR), Gibson, Keisha (AUTHOR), Kalantar-Zadeh, Kamyar (AUTHOR), Helm, Kelly (AUTHOR), Robinson, Dale (AUTHOR), Schneider, Bonnie (AUTHOR), Smith, Philip (AUTHOR), Tullus, Kjell (AUTHOR), Poyan-Mehr, Ali (AUTHOR), Hendry, Bruce (AUTHOR), Balkaran, Bridget L. (AUTHOR), Jauregui, Adam K. (AUTHOR), Wang, Aolin (AUTHOR), Nason, Ian (AUTHOR), Hazra, Nisha C. (AUTHOR), Xu, Chunyi (AUTHOR), Liu, Jingyi (AUTHOR), Zhou, Zheng-Yi (AUTHOR) |
| Source: | Quality of Life Research. Feb2025, Vol. 34 Issue 2, p353-363. 11p. |
| Subjects: | Quality of life, Mental health, Mental depression, Burden of care, Anxiety, Caregivers, IgA glomerulonephritis |
| Geographic Terms: | United States |
| Abstract: | 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. [ABSTRACT FROM AUTHOR] |
| Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.) | |
| Database: | Psychology and Behavioral Sciences Collection |
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| Header | DbId: pbh DbLabel: Psychology and Behavioral Sciences Collection An: 183284818 AccessLevel: 6 PubType: Academic Journal PubTypeId: academicJournal PreciseRelevancyScore: 0 |
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| Items | – Name: Title Label: Title Group: Ti Data: The humanistic burden of immunoglobulin A nephropathy on patients and care-partners in the United States. – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Szklarzewicz%2C+Justyna%22">Szklarzewicz, Justyna</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Floege%2C+Ute%22">Floege, Ute</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Gallego%2C+Daniel%22">Gallego, Daniel</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Gibson%2C+Keisha%22">Gibson, Keisha</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Kalantar-Zadeh%2C+Kamyar%22">Kalantar-Zadeh, Kamyar</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Helm%2C+Kelly%22">Helm, Kelly</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Robinson%2C+Dale%22">Robinson, Dale</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Schneider%2C+Bonnie%22">Schneider, Bonnie</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Smith%2C+Philip%22">Smith, Philip</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Tullus%2C+Kjell%22">Tullus, Kjell</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Poyan-Mehr%2C+Ali%22">Poyan-Mehr, Ali</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Hendry%2C+Bruce%22">Hendry, Bruce</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Balkaran%2C+Bridget+L%2E%22">Balkaran, Bridget L.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Jauregui%2C+Adam+K%2E%22">Jauregui, Adam K.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Wang%2C+Aolin%22">Wang, Aolin</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Nason%2C+Ian%22">Nason, Ian</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Hazra%2C+Nisha+C%2E%22">Hazra, Nisha C.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Xu%2C+Chunyi%22">Xu, Chunyi</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Liu%2C+Jingyi%22">Liu, Jingyi</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Zhou%2C+Zheng-Yi%22">Zhou, Zheng-Yi</searchLink> (AUTHOR) – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="JN" term="%22Quality+of+Life+Research%22">Quality of Life Research</searchLink>. Feb2025, Vol. 34 Issue 2, p353-363. 11p. – Name: Subject Label: Subjects Group: Su Data: <searchLink fieldCode="DE" term="%22Quality+of+life%22">Quality of life</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+health%22">Mental health</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+depression%22">Mental depression</searchLink><br /><searchLink fieldCode="DE" term="%22Burden+of+care%22">Burden of care</searchLink><br /><searchLink fieldCode="DE" term="%22Anxiety%22">Anxiety</searchLink><br /><searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22IgA+glomerulonephritis%22">IgA glomerulonephritis</searchLink> – Name: SubjectGeographic Label: Geographic Terms Group: Su Data: <searchLink fieldCode="DE" term="%22United+States%22">United States</searchLink> – Name: Abstract Label: Abstract Group: Ab Data: 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. [ABSTRACT FROM AUTHOR] – Name: AbstractSuppliedCopyright Label: Group: Ab Data: <i>Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.) |
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| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1007/s11136-024-03813-x Languages: – Code: eng Text: English PhysicalDescription: Pagination: PageCount: 11 StartPage: 353 Subjects: – SubjectFull: Quality of life Type: general – SubjectFull: Mental health Type: general – SubjectFull: Mental depression Type: general – SubjectFull: Burden of care Type: general – SubjectFull: Anxiety Type: general – SubjectFull: Caregivers Type: general – SubjectFull: IgA glomerulonephritis Type: general – SubjectFull: United States Type: general Titles: – TitleFull: The humanistic burden of immunoglobulin A nephropathy on patients and care-partners in the United States. Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Szklarzewicz, Justyna – PersonEntity: Name: NameFull: Floege, Ute – PersonEntity: Name: NameFull: Gallego, Daniel – PersonEntity: Name: NameFull: Gibson, Keisha – PersonEntity: Name: NameFull: Kalantar-Zadeh, Kamyar – PersonEntity: Name: NameFull: Helm, Kelly – PersonEntity: Name: NameFull: Robinson, Dale – PersonEntity: Name: NameFull: Schneider, Bonnie – PersonEntity: Name: NameFull: Smith, Philip – PersonEntity: Name: NameFull: Tullus, Kjell – PersonEntity: Name: NameFull: Poyan-Mehr, Ali – PersonEntity: Name: NameFull: Hendry, Bruce – PersonEntity: Name: NameFull: Balkaran, Bridget L. – PersonEntity: Name: NameFull: Jauregui, Adam K. – PersonEntity: Name: NameFull: Wang, Aolin – PersonEntity: Name: NameFull: Nason, Ian – PersonEntity: Name: NameFull: Hazra, Nisha C. – PersonEntity: Name: NameFull: Xu, Chunyi – PersonEntity: Name: NameFull: Liu, Jingyi – PersonEntity: Name: NameFull: Zhou, Zheng-Yi IsPartOfRelationships: – BibEntity: Dates: – D: 01 M: 02 Text: Feb2025 Type: published Y: 2025 Identifiers: – Type: issn-print Value: 09629343 Numbering: – Type: volume Value: 34 – Type: issue Value: 2 Titles: – TitleFull: Quality of Life Research Type: main |
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