Objective Skin involvement in Systemic Lupus Erythematosus (SLE) is still often a challenge for the rheumatologist, who must consider patients’ perspective in order to ensure the best quality of care. The aim of the study was to evaluate the impact of skin involvement on Health-Related Quality of Life (HRQoL) in a monocentric cohort of SLE patients.

Methods This is a cross-sectional analysis of prospectively collected data of adult consecutive SLE patients (2019 EULAR/ACR criteria) with skin involvement. The following data have been collected for each patient: demographics and clinical data, SLEDAI-2K and SLICC-DI. Clinical evaluation of skin was performed using the Cutaneous LE Disease Area and Severity Index (CLASI), which we used to define skin disease activity and damage. At each assessment, patients completed the following Patient Reported Outcomes: LIT, SLAQ, FACIT-F, HADS and Skindex-16.

Results We included 109 assessments in 59 SLE patients during the period February 2021 – June 2023. Cohort characteristics are shown in table 1. CLASI activity assessment correlated positively with Skindex-16 scores (rs≥0.307, p≤0.002) and to a lesser extent with LIT (rs=0.231, p=0.02); CLASI damage correlated positively con LIT, HADS depression and Skindex-16 functioning subscales (rs≥0.280, p≤0.006) and negatively with FACIT-F (rs=-0.305, p=0.002). Analysing potential differences in the impact of skin activity and damage on QoL, we noted that only the presence of active skin disease seems to influence the patients‘ perception assessed with the Skindex-16, as illustrated in table 2. Considering the overall disease burden, we found significantly higher scores in all Skindex-16 subscales, LIT, SLAQ and HADS anxiety subscale in females compared to males (p≤0.003). We found no further differences in relation to gender and other demographic and clinical features.

Conclusions Skin disease is confirmed as a major determinant of HRQoL in SLE patients. While disease activity has a significant impact on patients’ perception of skin symptoms, our data suggest that the presence of chronic skin damage, rather than activity, may have a more negative impact on HRQoL, significantly influencing the emotional sphere and the patient‘s perception of the burden of disease. Further studies are needed to confirm these preliminary findings.