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

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


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.


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).


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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Valerie Marske of Vedanta Research supported survey instrument development as well and data collection, Kristina Fanning, PhD provided analytical support, and Dana Franznick, PharmD and Ishveen Chopra, PhD provided medical writing support. This study was funded by Mallinckrodt Pharmaceuticals.


This study was funded by Mallinckrodt Pharmaceuticals, Bedminster, New Jersey via grants to Vedanta Research and the Lupus Foundation of America.

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Correspondence to Patricia Katz.

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Conflict of interest

GJW and EC-S are employees of Mallinckrodt Pharmaceuticals, and are stockholders of the company. PK is a paid consultant of Vedanta Research. MLR and RB are paid consultants of Mallinckrodt Pharmaceuticals. PD was previously an employee of Lupus Foundation of America and LT is a current employee of Lupus Foundation of America, which received grant funding to support study data collection.

Ethics approval

Ethical and Independent Review Services (Independence, MO) reviewed the study methods, consent form, and survey tools and certified that the study (#16149–01) was exempt from the Code of Federal Regulation 45 CFR 46.101(b) on 20 December 2016.

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Study respondents provided electronic informed consent before beginning the survey.

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Katz, P., Wan, G.J., Daly, P. et al. Patient-reported flare frequency is associated with diminished quality of life and family role functioning in systemic lupus erythematosus. Qual Life Res 29, 3251–3261 (2020).

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