Sloan Melanie, Bourgeois James A, Leschziner Guy, Pollak Thomas A, Pitkanen Mervi, Harwood Rupert, Bosley Michael, Bortoluzzi Alessandra, Andreoli Laura, Diment Wendy, Brimicombe James, Ubhi Mandeep, Barrere Colette, Naughton Felix, Gordon Caroline, D'Cruz David
Department of Public Health and Primary Care Unit, University of Cambridge, UK.
Department of Psychiatry and Behavioral Sciences, University of California, Davis Medical Center, Sacramento, CA, United States.
EClinicalMedicine. 2024 May 20;73:102634. doi: 10.1016/j.eclinm.2024.102634. eCollection 2024 Jul.
Neuropsychiatric symptoms in SLE and other systemic autoimmune rheumatic diseases (SARDs) are challenging to diagnose, attribute and manage. We investigated the timings of onset of a broad range of neuropsychiatric (NP) symptoms in relation to timing of SLE onset. In addition, we explored whether NP symptoms may be a prodrome to SARD onset and to subsequent flares.
We collected patient reports of the timing of their first episode of 29 NP symptoms relative to SLE non-NP symptom onset. Surveys (n = 676 SLE patients and n = 400 clinicians) and interviews (n = 50 clinicians; and n = 69 SARD patients, including 27 SLE patients) were completed from 2022 to 2023, and analysed using mixed methods.
The majority of NP symptoms did not first present around the time of SLE onset, contrary to the prevailing view among many rheumatology participants and in the literature. For example, among patients who experienced hallucinations, 54% reported first presentation >1 year after disease onset. Patient interviews also revealed that a range of NP symptoms may be a prodrome to SLE/SARDs onset and later flares, including symptoms not represented in existing classification criteria. Evidence of a possible prodromal syndrome was elicited from those patients who experienced hallucinations. Of these, 61% (SLE) and 34% (other SARDs) reported increasingly disrupted dreaming sleep (usually nightmares) prior to their hallucinations. In-depth interviews revealed that progression of symptoms in flares showed a high degree of inter-patient variation, whilst symptom progression was often similar in individual patient's recurrent flares.
Neuropsychiatric symptoms can first present at any stage in the SLE disease course. Attributional decisions should evaluate timings of NP symptoms in relation to timing of SLE/SARD symptom onset rather than time of diagnosis due to frequent diagnostic delays. Greater recognition of prodromal/early NP symptoms indicating impending SLE flares (and potentially other SARD flares) could enable quicker flare identification and treatment.
The Lupus Trust.
系统性红斑狼疮（SLE）和其他系统性自身免疫性风湿性疾病（SARDs）中的神经精神症状在诊断、归因和管理方面具有挑战性。我们研究了一系列广泛的神经精神（NP）症状的发作时间与SLE发作时间的关系。此外，我们还探讨了NP症状是否可能是SARD发作及随后病情复发的前驱症状。
我们收集了患者关于29种NP症状首次发作时间相对于SLE非NP症状发作时间的报告。在2022年至2023年期间完成了调查（n = 676例SLE患者和n = 400名临床医生）和访谈（n = 50名临床医生；以及n = 69例SARD患者，包括27例SLE患者），并采用混合方法进行分析。
与许多风湿病参与者及文献中的普遍观点相反，大多数NP症状并非在SLE发作时首次出现。例如，在经历幻觉的患者中，54%报告首次出现幻觉是在疾病发作1年后。患者访谈还显示，一系列NP症状可能是SLE/SARD发作及随后病情复发的前驱症状，包括现有分类标准中未涵盖的症状。经历幻觉的患者中出现了可能存在前驱综合征的证据。其中，61%（SLE）和34%（其他SARDs）报告在出现幻觉之前梦境睡眠（通常为噩梦）受到越来越多干扰。深入访谈显示，病情复发时症状的进展在患者之间存在高度差异，而个体患者复发时症状进展往往相似。
神经精神症状可在SLE病程的任何阶段首次出现。归因决策应评估NP症状的发作时间与SLE/SARD症状发作时间而非诊断时间的关系，因为诊断常常延迟。对预示即将发生SLE病情复发（可能还有其他SARD病情复发）的前驱/早期NP症状有更深入的认识，有助于更快地识别病情复发并进行治疗。
狼疮信托基金。
