ArticleRheumatology (Oxford, England)2024
Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases: an international mixed methods study.
Article in Rheumatology (Oxford, England), 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 2 of them syntheses that pooled it.
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Who cites it
24 citing papers in PubMed, 2 syntheses or guidelines pooled it, 69 citations in OpenAlex.
- British Society for Rheumatology guideline on management of adult and juvenile onset Sjögren disease.Rheumatology (Oxford, England) · 2025Guideline
- Elucidating the bidirectional association between autoimmune diseases and depression: a systematic review and meta-analysis.BMJ mental health · 2024Pooled it
- A randomised controlled trial to assess the feasibility and acceptability of remote psychosocial and exercise interventions for people with lupus: The ADAPT feasibility trial.Rheumatology international · 2025Trial
- Describing flares: a mixed methods study comparing patient and clinician perspectives in systemic lupus erythematosus and other rheumatic diseases.Rheumatology (Oxford, England) · 2026Article
- Psychological Stress and Anxiety in Autoimmune Diseases: A Cross-Sectional Case-Control Study.Healthcare (Basel, Switzerland) · 2026Article
- Fibromyalgia in systemic autoimmune rheumatic diseases: a mixed-methods study of patient and clinician perspectives.Rheumatology international · 2026Article
- Systemic lupus erythematosus is associated with an increased risk for orthorexia nervosa: a cross-sectional study.Rheumatology international · 2026Article
- Two-year follow-up of neuropsychiatric symptoms in patients with systemic autoimmune rheumatic diseases: longitudinal insights on depression, anxiety, memory and adaptation in the INSPIRE cohort.EClinicalMedicine · 2026Article
- Discordance Between Patients and Physicians on Key Determinants of Systemic Lupus Erythematosus Burden: Insights From a French Comprehensive Survey.ACR open rheumatology · 2026Article
- Visual Hallucinations and Illusions as Missed Diagnostic Clues in Autoimmune Disease: A Patient Perspective.Journal of patient experience · 2026Article
- Adapting to living with systemic autoimmune rheumatic diseases; a qualitative exploration of patient and clinician perspectives.Rheumatology international · 2025Article
- Core Mental Health Data Set (CMHDS) methods feasibility paper.BMJ health & care informatics · 2025Article
- Article
- 'I still can't forget those words': mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses.Rheumatology (Oxford, England) · 2025Article
- Barriers and Facilitators to Psychological Safety During Medical Procedures Among Individuals Diagnosed with Chronic Illness in Childhood.Healthcare (Basel, Switzerland) · 2025Article
- Association between a history of mental illness and the risk of systemic autoimmune rheumatic diseases: a nationwide, population-based case-control study.Clinical rheumatology · 2025Article
- Three cases with chronic obsessive compulsive disorder report gains in wellbeing and function following rituximab treatment.Molecular psychiatry · 2025Article
- Neuropsychiatric symptoms in systemic lupus erythematosus: mixed methods analysis of patient-derived attributional evidence in the international INSPIRE project.Rheumatology (Oxford, England) · 2025Article
- Skin-brain dialogue in auto-inflammatory diseases: A new route to biomarkers?Brain, behavior, & immunity - health · 2024Article
- An exploratory study of the damage markers NfL, GFAP, and t-Tau, in cerebrospinal fluid and other findings from a patient cohort enriched for suspected autoimmune psychiatric disease.Translational psychiatry · 2024Article
Corrections and comments
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Authors and funding
18 authors at 9 institutions in 2 countries.
Funding
Abstract
objectiveA limited range of neuropsychiatric symptoms have been reported in systemic autoimmune rheumatic diseases (SARDs), with varied symptom prevalence. This study aimed to investigate a wider range of potential symptoms than previous studies, compare patient self-reports with clinician estimates, and explore barriers to symptom identification.
methodsMixed methods were used. Data from SARDs patients (n = 1853) were compared with controls (n = 463) and clinicians (n = 289). In-depth interviews (n = 113) were analysed thematically. Statistical tests compared means of survey items between patients and controls, 8 different SARD groups, and clinician specialities.
resultsSelf-reported lifetime prevalences of all 30 neuropsychiatric symptoms investigated (including cognitive, sensorimotor and psychiatric) were significantly higher in SARDs than controls. Validated instruments assessed 55% of SARDs patients as currently having depression and 57% anxiety. Barriers to identifying neuropsychiatric symptoms included: (i) limits to knowledge, guidelines, objective tests and inter-speciality cooperation; (ii) subjectivity, invisibility and believability of symptoms; and (iii) under-eliciting, under-reporting and under-documenting. A lower proportion of clinicians (4%) reported never/rarely asking patients about mental health symptoms than the 74% of patients who reported never/rarely being asked in clinic (P < 0.001). Over 50% of SARDs patients had never/rarely reported their mental health symptoms to clinicians, a proportion underestimated at <10% by clinicians (P < 0.001).
conclusionNeuropsychiatric symptom self-reported prevalences are significantly higher in SARDs than controls, and are greatly underestimated by most clinicians. Research relying on medical records and current guidelines is unlikely to accurately reflect patients' experiences of neuropsychiatric symptoms. Improved inter-speciality communication and greater patient involvement is needed in SARD care and research.
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