Flare Frequency Associated With Reduced Quality of Life and Family Role Functioning in SLE

SLE of in the hand
Lupus flares contributed to impaired functional and psychologic well-being, family functioning, and number of monthly healthy days.

Patients with systemic lupus erythematosus (SLE) often experience flares associated with their condition, and these flares contribute to impaired functional and psychologic well-being, family functioning, and number of monthly healthy days, according to study results published in Quality of Life Research.

Researchers developed an online survey that was sent to patients with a self-reported physician diagnosis of SLE, skin or discoid lupus, lupus nephritis, or lupus. The survey included questions about the frequency of lupus flares, quality of life (QoL), and sociodemographic and lupus characteristics. Three questionnaires were incorporated into the survey to assess range of QoL domains: the Lupus Impact Tracker (LIT), which assessed lupus symptoms and health-related QoL (HRQoL), the SLE-Family questionnaire, which measured family role functioning, and the Healthy Days Core Module, which measured overall mental and physical health. Researchers used Chi-square and analysis of variance to evaluate differences by flare frequency and multivariable linear regression and generalized linear models to evaluate the independent relationships of flare frequency to HRQoL.

A total of 1066 survey respondents with either SLE or lupus nephritis completed the survey; mean duration of illness of respondents was 12.4 years. A total of 93.4% of the study sample were women; 82.3% were White; and 49.7% were employed or students. Mean age of respondents was 46 years and mean body mass index of patients was 29.6 kg/m2. A total of 84.8% of respondents reported at least 1 flare during the past 12 months, and 19.5% reported experiencing ≥7 flares. The mean duration of illness for the sample was 12.4 years, and shorter duration of illness was related to higher number of flares.

Significantly higher LIT scores were observed as flare frequency increased, indicating that participants with higher flare frequency had lower QoL. As flare frequency increased, lupus impact on family role functioning measured by the SLE-Family Score increased. Analysis showed a trend of fewer healthy days as flare frequency increased; after controlling for covariates, respondents with 1 to 3 flares had an average of 37% fewer healthy days than those with 0 flares in the past year (rate ratio [RR], 0.63; 95% CI, 0.52-0.77). Compared with participants with 0 flares, those with 4 to 6 flares had 57% less healthy days (RR, 0.43; 95% CI, 0.34-0.54) and those with ≥7 flares had 77% fewer healthy days (RR, 0.23; 95% CI, 0.18-0.30).

Study limitations included the fact that the study results could be not generalized for all populations with lupus, patients’ self-reporting their lupus diagnosis, and the inability of the researchers to assess lupus flare severity. 

“Prevention of disease flares is a cornerstone of clinical care for lupus, but these results highlight the need for effective therapies for the management of SLE-related flares to improve QoL,” the researchers concluded. “The perspectives of patients regarding their disease and its management can be useful for designing patient-centered strategies to improve [QoL].”


Katz P, Wan GJ, Daly P, et al. Patient-reported flare frequency is associated with diminished quality of life and family role functioning in systemic lupus erythematosus [published online July 18, 2020]. Qual Life Res. doi:10.1007/s11136-020-02572-9