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Published in: Quality of Life Research 12/2020

18-07-2020

Patient-reported flare frequency is associated with diminished quality of life and family role functioning in systemic lupus erythematosus

Authors: Patricia Katz, George J. Wan, Paola Daly, Lauren Topf, Erin Connolly-Strong, Ryan Bostic, Michael L. Reed

Published in: Quality of Life Research | Issue 12/2020

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Abstract

Purpose

To understand the influence of the systemic lupus erythematosus (SLE)-related flares on patient’s health-related quality of life (HRQoL).

Methods

An online survey included individuals with self-reported physician’s diagnosis of SLE or lupus nephritis (LN). Lupus impact tracker (LIT) assessed lupus symptoms and HRQoL, SLE-Family questionnaire measured family role functioning, and Healthy Days Core Module (HDCM) measured overall mental and physical health. Chi-square and analysis of variance evaluated differences by flare frequency. Multivariable linear regression and generalized linear models evaluated the independent relationships of flare frequency to HRQoL.

Results

1066 respondents with SLE or LN completed the survey. Mean (SD) duration of illness was 12.4 (10.1) years. 93.4% (n = 996) were women, 82.3% (n = 830) were White, and 49.7% (n = 530) were employed or students. More frequent flares were associated with significantly worse scores on all HRQoL measures: LIT (adjusted means: 0 flares, 31.8; 1–3 flares, 47.0; 4–6 flares, 56.1; ≥ 7 flares, 63.6; P < 0.001); SLE-Family (adjusted means: 0 flares, 3.1; 1–3 flares 3.8; 4–6 flares, 4.3; ≥ 7 flares, 4.6, P < 0.001); HDCM unhealthy days (0 flares, 8.7; 1–3 flares, 17.4; 4–6 flares, 21.5; ≥ 7 flares, 26.2 days, P < 0.001).

Conclusion

Lupus flares contributed to impaired functional and psychological well-being, family functioning, and number of monthly healthy days. Better understanding of the burden of flare activity from the patient’s perspective will support a holistic approach to lupus management.
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Metadata
Title
Patient-reported flare frequency is associated with diminished quality of life and family role functioning in systemic lupus erythematosus
Authors
Patricia Katz
George J. Wan
Paola Daly
Lauren Topf
Erin Connolly-Strong
Ryan Bostic
Michael L. Reed
Publication date
18-07-2020
Publisher
Springer International Publishing
Published in
Quality of Life Research / Issue 12/2020
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-020-02572-9

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