Background/Purpose: Systemic lupus erythematosus (SLE) is a multi-organ chronic autoimmune disease that can negatively affect patients’ health-related quality of life (HRQOL). This cross-sectional study collected HRQOL data from a sample of SLE patients using questionnaires from the Patient-Reported Outcomes Measurement Information System (PROMIS) and Quality of Life in Neurological Disorders (Neuro-QoL) to assess its association with patient-reported SLE disease severity.

Methods: Individuals with SLE were recruited via patient advocacy organizations to complete an online survey consisting of the PROMIS-29 health profile, PROMIS Psychosocial Illness Impact-Negative, and Neuro-QoL Applied Cognition. Patients self-rated their SLE disease severity to be negligible, mild, moderate, or severe.  PROMIS and Neuro-QoL scores have mean=50, standard deviation (SD)=10 in the US general population. Analysis of variance was used to compare HRQOL scores between SLE disease severity groups.

Results: Of the 333 survey participants (mean age: 45 years; 92% female; 26% Black; mean disease duration=12 years), 55.6% reported their SLE disease severity as moderate or severe. Mean HRQOL scores were worse than those of the general population by half a SD or more with the greatest deficits observed in Fatigue, Applied Cognition, Psychosocial Illness Impact-Negative, Pain Interference, and Physical Function [Figure 1] [Figure 2].  Greater patient-reported SLE disease severity was associated with worse mean HRQOL scores (all p<0.05). Reliability exceeded 0.70 for all PROMIS and Neuro-QoL scores.

Conclusion: Relative to the general population, patients with SLE reported substantial deficits in HRQOL that correlated with their severity disease, especially in fatigue, pain, cognition, physical function and psychosocial illness impact. These deficits should be monitored in clinical practice in care for SLE patients and considered when investigating new therapies.