Sloan Melanie, Pollak Thomas A, Massou Efthalia, Leschziner Guy, Andreoli Laura, Harwood Rupert, Bosley Michael, Pitkanen Mervi, Diment Wendy, Bortoluzzi Alessandra, Zandi Michael S, Ubhi Mandeep, Gordon Caroline, Jayne David, Naughton Felix, Barrere Colette, Wincup Chris, Brimicombe James, Bourgeois James A, D'Cruz David
Department of Public Health and Primary Care Unit, University of Cambridge, Cambridge, UK.
Institute of Psychiatry, Psychology and Neuroscience, King's College London, and South London and Maudsley NHS Foundation Trust, London, UK.
Rheumatology (Oxford). 2025 Mar 1;64(3):1179-1192. doi: 10.1093/rheumatology/keae194.
Attribution of neuropsychiatric symptoms in systemic lupus erythematosus (SLE) relies heavily on clinician assessment. Limited clinic time, variable knowledge and symptom under-reporting contribute to discordance between clinician assessments and patient symptoms. We obtained attributional data directly from patients and clinicians in order to estimate and compare potential levels of direct attribution to SLE of multiple neuropsychiatric symptoms using different patient-derived measures.
Quantitative and qualitative data analysed included: the prevalence and frequency of neuropsychiatric symptoms, response to corticosteroids and concurrence of neuropsychiatric symptoms with non-neuropsychiatric SLE disease activity. SLE patients were also compared with controls and inflammatory arthritis (IA) patients to explore the attributability of neuropsychiatric symptoms to the direct disease effects on the brain/nervous system.
We recruited 2817 participants, including 400 clinicians. SLE patients (n = 609) reported significantly higher prevalences of neuropsychiatric symptoms than controls (n = 463) and IA patients (n = 489). SLE and IA patients' quantitative data demonstrated multiple neuropsychiatric symptoms relapsing/remitting with other disease symptoms such as joint pain. Over 45% of SLE patients reported resolution/improvement of fatigue, positive sensory symptoms, severe headache, and cognitive dysfunction with corticosteroids. Evidence of direct attributability in SLE was highest for hallucinations and severe headache. SLE patients had greater reported improvement from corticosteroids (p= 0.008), and greater relapsing-remitting with disease activity (P < 0.001) in the comparisons with IA patients for severe headache. Clinicians and patients reported insufficient time to discuss patient-reported attributional evidence. Symptoms viewed as indirectly related/non-attributable were often less prioritized for discussion and treatment.
We found evidence indicating varying levels of direct attributability of both common and previously unexplored neuropsychiatric symptoms in SLE patients, with hallucinations and severe headache assessed as the most directly attributable. There may also be-currently under-estimated-direct effects on the nervous system in IA and other systemic rheumatological diseases.
系统性红斑狼疮(SLE)神经精神症状的归因在很大程度上依赖于临床医生的评估。临床时间有限、知识水平参差不齐以及症状报告不足,导致临床医生评估与患者症状之间存在不一致。我们直接从患者和临床医生那里获取归因数据,以便使用不同的患者衍生测量方法来估计和比较多种神经精神症状对SLE的潜在直接归因水平。
分析的定量和定性数据包括:神经精神症状的患病率和频率、对皮质类固醇的反应以及神经精神症状与非神经精神性SLE疾病活动的并发情况。还将SLE患者与对照组和炎症性关节炎(IA)患者进行比较,以探讨神经精神症状对大脑/神经系统的直接疾病影响的可归因性。
我们招募了2817名参与者,包括400名临床医生。SLE患者(n = 609)报告的神经精神症状患病率明显高于对照组(n = 463)和IA患者(n = 489)。SLE和IA患者的定量数据表明,多种神经精神症状与关节疼痛等其他疾病症状一起复发/缓解。超过45%的SLE患者报告疲劳、阳性感觉症状、严重头痛和认知功能障碍在使用皮质类固醇后得到缓解/改善。幻觉和严重头痛在SLE中直接可归因的证据最为充分。与IA患者相比,SLE患者使用皮质类固醇后报告的改善更明显(p = 0.008),严重头痛与疾病活动的复发-缓解更明显(P < 0.001)。临床医生和患者报告没有足够的时间讨论患者报告的归因证据。被视为间接相关/不可归因的症状在讨论和治疗中往往不太受重视。
我们发现有证据表明,SLE患者常见和以前未探索的神经精神症状的直接可归因水平各不相同,幻觉和严重头痛被评估为最直接可归因的症状。IA和其他系统性风湿性疾病对神经系统可能也存在目前被低估的直接影响。