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ToolsSloan, 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. and D’Cruz, David (2025) Neuropsychiatric symptoms in Systemic Lupus Erythematosus: Mixed methods analysis of patient-derived attributional evidence in the international INSPIRE project. Rheumatology, 64 (3). 1179–1192. ISSN 1462-0324
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Abstract
Objective: 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. Methods: 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. Results: We recruited 2817 participants, including 400 clinicians. SLE patients (n ¼ 609) reported significantly higher prevalences of neuropsychiatric symptoms than controls (n ¼ 463) and IA patients (n ¼ 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 (p¼ 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. Conclusion: 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.
| Item Type: | Article |
|---|---|
| Additional Information: | Data availability: Anonymized data will be available on reasonable request following the completion of the INSPIRE studies. Funding information: This component of the INSPIRE project was funded by The Lupus Trust. |
| Uncontrolled Keywords: | cns lupus,npsle,sle,attribution,autoimmunity,biopsychosocial,diagnosis,inflammatory arthritis,mental health,misattribution,neuropsychiatric lupus,patient-clinician interactions,rheumatology,pharmacology (medical),rheumatology ,/dk/atira/pure/subjectarea/asjc/2700/2736 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > School of Health Sciences |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health Faculty of Medicine and Health Sciences > Research Groups > Behavioural and Implementation Science Faculty of Medicine and Health Sciences > Research Groups > Health Promotion |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 06 Apr 2024 01:32 |
| Last Modified: | 17 Apr 2025 00:22 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/94850 |
| DOI: | 10.1093/rheumatology/keae194 |
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