神经精神性狼疮患者的 HRQoL 较无神经精神性系统性红斑狼疮且无脑神经病变活动的系统性红斑狼疮患者更差，无论是否存在神经精神病变活动。

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

机构信息

Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden.

Department of Gastroenterology, Dermatology and Rheumatology, Karolinska University Hospital, Stockholm, Sweden.

出版信息

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

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.

目的

相当比例的系统性红斑狼疮（SLE）患者报告其健康相关生活质量（HRQoL）较差。我们的目的是调查神经精神性系统性红斑狼疮（NPSLE）对患者报告结局的影响。

方法

我们分析了四项 III 期试验（BLISS-52、BLISS-76、BLISS-SC、EMBRACE；N=2968）的数据。NPSLE 组包含基线时存在 NP-BILAG A/B/C/D 或 NP-SLEDAI-2K 任何描述符评分的个体（N=350），而非 NPSLE 组则由 NP-BILAG E 的患者组成（N=2618）。使用 SF-36、EQ-5D-3L 和 FACIT-F 评估 HRQoL。完全健康状态（FHS）定义为所有 EQ-5D 维度均“无问题”。

结果

与非 NPSLE 人群相比，NPSLE 患者的 SF-36 生理和心理成分综合评分较低[平均值（标准差）：35.7（9.1）比 39.6（9.6）；P<0.001 和 37.3（12.1）比 41.4（11.0）；P<0.001]。与非 NPSLE 患者相比，NPSLE 患者在所有 EQ-5D 维度中也表现出较差的 HRQoL（所有 P<0.05）。与非 NPSLE 组相比，NPSLE 患者经历 FHS 的比例明显较低（3.3%比 14.5%；P<0.001）。NPSLE 与严重疲劳相关[23.8（12.2）比 31.5（11.6）；P<0.001]。值得注意的是，我们的研究结果表明，在 SF-36、EQ-5D、FHS 或 FACIT-F 评分方面，活动期和非活动期 NPSLE 患者之间没有明显区别。