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Objective Substantial proportions of systemic lupus erythematosus (SLE) patients report severe fatigue and adverse Health-related Quality of Life (HRQoL). Particularly neuropsychiatric manifestations have been associated with reduced HRQoL. Our objective was to investigate patient-reported outcomes in patients with neuropsychiatric SLE (NPSLE) in comparison to SLE patients without neuropsychiatric involvement. Methods We analysed baseline data from four phase III trials (BLISS-52, BLISS-76, BLISS-SC, EMBRACE; N=2968). The NPSLE group comprised individuals with NP BILAG scores A/B/C/D (N=350). The active NPSLE group was defined as individuals with NP BILAG scores A/B or active neuropsychiatric involvement based on NP SLEDAI-2K domains (n=71). The non-NPSLE group consisted of patients with NP BILAG score E (N=2621). HRQoL was assessed utilising the generic instruments Medical Outcomes Study Questionnaire Short Form 36 (SF-36) health survey, the three-level version of EQ-5D (EQ-5D-3L), and the Functional Assessment of Chronic Illness Therapy (FACIT) Fatigue (FACIT-F) scale. Full health state (FHS) was defined as an experience of 'no problems' in all five EQ-5D dimensions. Impaired HRQoL by EQ-5D was defined as level 2 or 3 responses in the different dimension. Results We observed clinically momentous reduced HRQoL in SLE patients with neuropsychiatric manifestations. NPSLE patients had significantly lower scores of SF-36 physical component summary (PCS) and mental component summary (MCS) compared to the non-NPSLE population [mean (s.d.): 35.7 (9.1) vs. 39.6 (9.6); pConclusions Neuropsychiatric involvement in patients with SLE has a detrimental effect on HRQoL experience and is associated with more severe fatigue. Impaired HRQoL scores remain steady in NPSLE patients regardless of the degree of neuropsychiatric activity. Early intervention strategies are warranted in this specific group of SLE patients to enhance long-term patient-reported outcomes.
Nikolopoulos et al. (Fri,) studied this question.