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. 2024 Sep 1;63(9):2494-2502.
doi: 10.1093/rheumatology/keae216.

Patients with NPSLE experience poorer HRQoL and more fatigue than SLE patients with no neuropsychiatric involvement, irrespective of neuropsychiatric activity

Dionysis Nikolopoulos  1   2 , Nursen Cetrez  1   2 , Julius Lindblom  1   2 , Leonardo Palazzo  1   2 , Yvonne Enman  1   2 , Ioannis Parodis  1   2   3
Affiliations

Patients with NPSLE experience poorer HRQoL and more fatigue than SLE patients with no neuropsychiatric involvement, irrespective of neuropsychiatric activity

Dionysis Nikolopoulos et al. Rheumatology (Oxford). .

Abstract

Objectives: Substantial proportions of patients with SLE report poor health-related quality of life (HRQoL). Our objective was to investigate the impact of neuropsychiatric involvement (NP) in SLE on patient-reported outcomes.

Methods: We analysed data from four phase III trials (BLISS-52, BLISS-76, BLISS-SC, EMBRACE; N = 2968). The NPSLE group comprised individuals with NP-BILAG A/B/C/D or score in any descriptor of the NP-SLEDAI-2K at baseline (N = 350), while the non-NPSLE group consisted of patients with NP-BILAG E (N = 2618). HRQoL was assessed with the SF-36, EQ-5D-3L, and FACIT-F. Full health state (FHS) was defined as 'no problems' in all EQ-5D dimensions.

Results: NPSLE patients reported lower scores in the SF-36 physical and mental component summary compared with the non-NPSLE population [mean (s.d.): 35.7 (9.1) vs 39.6 (9.6); P < 0.001 and 37.3 (12.1) vs 41.4 (11.0); P < 0.001, respectively]. NPSLE patients also exhibited impaired HRQoL in all EQ-5D dimensions compared with non-NPSLE patients (P < 0.05 for all). A substantially lower proportion of NPSLE patients experienced FHS in comparison with the non-NPSLE group (3.3% vs 14.5%; P < 0.001). NPSLE was associated with severe fatigue [23.8 (12.2) vs 31.5 (11.6); P < 0.001]. Notably, our findings revealed no discernible distinctions between active and inactive NPSLE patients with regard to SF-36, EQ-5D, FHS or FACIT-F scores.

Conclusion: NP in patients with SLE has a detrimental effect on HRQoL experience and is associated with severe fatigue, regardless of the degree of neuropsychiatric disease activity. Early intervention is warranted in NPSLE patients to enhance long-term HRQoL experience.

Keywords: CNS lupus; patient-reported outcomes; quality of life; systemic lupus erythematosus.

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Figures

Figure 1.
Figure 1.
Comparisons of HRQoL between NPSLE and non-neuropsychiatric (non-NP) SLE patients. The figure illustrates the comparison of 36-item Short Form health survey questionnaire (SF-36) scores between NPSLE (green) and non-NP SLE (light blue) patients. The bar chart illustrates comparisons of SF-36 component summary scores for (A) the physical component summary (PCS) and (B) the mental component summary (MCS). (C) The radial chart illustrates comparisons of mean SF-36 subscale scores for physical functioning (PF), role physical (RoleP), bodily pain (BP), general health (GH), vitality (VT), social functioning (SocF), role emotional (RE), and mental health (MH). Asterisks indicate statistically significant associations: *P < 0.05, **P < 0.01, ***P < 0.001. Data are presented as the mean (s.d.). HRQoL: health-related quality of life
Figure 2.
Figure 2.
Comparisons of HRQoL between NPSLE and non-neuropsychiatric (non-NP) SLE patients. The figure illustrates the comparison of HRQoL perceptions between SLE patients with (green) and without (light blue) NP with regard to (A) FACIT-F scores, (B) EQ-5D utility index scores, (C) EQ-VAS scores and (D) EQ-5D FHS. Asterisks indicate statistically significant associations: *P < 0.05, **P < 0.01, ***P < 0.001. Data are presented as the mean (s.d.). HRQoL: health-related quality of life; FACIT-F: Functional Assessment of Chronic Illness Therapy—Fatigue; EQ-5D: EuroQol research foundation 5-dimension; VAS: visual analogue scale; FHS: full health state
Figure 3.
Figure 3.
EQ-5D dimensions in NPSLE and non-neuropsychiatric (non-NP) SLE patients. The figure illustrates comparisons between NPSLE and non-NP SLE patients with regard to the five different dimensions of the EQ-5D questionnaire i.e. (A) mobility, (B) self-care, (C) usual activities, (D) pain/discomfort and (E) anxiety/depression. The proportions of patients reporting no problems (level 1), moderate problems (level 2) and major problems (level 3) are denoted by colour-coded sections (blue, yellow and red, respectively). P-values derived from Pearson’s χ2 tests indicate comparisons of level 1 (no problems) experienced between patients with and without NP
Figure 4.
Figure 4.
Comparisons of HRQoL between patients with active NPSLE and patients with prior yet currently quiescent NPSLE. The figure illustrates comparisons of 36-item Short Form health survey questionnaire (SF-36) scores between patients with active NPSLE (orange) and patients with prior yet currently quiescent NPSLE (yellow). The bar chart illustrates comparisons of SF-36 component summary scores for (A) the physical component summary (PCS) and (B) the mental component summary (MCS). (C) The radial chart illustrates comparisons of mean SF-36 subscale scores for physical functioning (PF), role physical (RoleP), bodily pain (BP), general health (GH), vitality (VT), social functioning (SocF), role emotional (RE), and mental health (MH). Asterisks indicate statistically significant associations: *P < 0.05, **P < 0.01, ***P < 0.001. Data are presented as the mean (s.d.). HRQoL: health-related quality of life
Figure 5.
Figure 5.
Comparisons of HRQoL between active and inactive NPSLE. The figure illustrates comparisons of HRQoL perceptions between patients with active (orange) and patients with prior yet currently inactive (yellow) neuropsychiatric involvement with regard to (A) FACIT-F scores, (B) EQ-5D utility index scores, (C) EQ-VAS scores and (D) EQ-5D FHS. Asterisks indicate statistically significant associations: *P < 0.05, **P < 0.01, ***P < 0.001. Data are presented as the mean (s.d.). HRQoL: health-related quality of life; FACIT-F: Functional Assessment of Chronic Illness Therapy—Fatigue; EQ-5D: EuroQol research foundation 5-dimension; VAS: visual analogue scale; FHS: full health state
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