Attribution of neuropsychiatric symptoms and prioritisation of evidence in the diagnosis of neuropsychiatric lupus: mixed methods analysis of patient and clinician perspectives from the international INSPIRE study

Melanie Sloan; Laura Andreoli; Michael S Zandi; Rupert Harwood; Mervi Pitkanen; Sam Sloan; Colette Barrere; Efthalia Massou; Chris Wincup; Michael Bosley; Felix Naughton; Mandeep Ubhi; David Jayne; Guy Leschziner; James Brimicombe; Wendy Diment; Kate Middleton; Caroline Gordon; David D'Cruz; Thomas A Pollak

doi:10.1093/rheumatology/kead685

Attribution of neuropsychiatric symptoms and prioritisation of evidence in the diagnosis of neuropsychiatric lupus: mixed methods analysis of patient and clinician perspectives from the international INSPIRE study

Rheumatology (Oxford). 2023 Dec 18:kead685. doi: 10.1093/rheumatology/kead685. Online ahead of print.

Authors

Melanie Sloan¹, Laura Andreoli², Michael S Zandi³, Rupert Harwood⁴, Mervi Pitkanen⁵, Sam Sloan⁶, Colette Barrere⁷, Efthalia Massou¹, Chris Wincup⁸, Michael Bosley⁷, Felix Naughton⁹, Mandeep Ubhi¹⁰, David Jayne¹¹, Guy Leschziner¹², James Brimicombe¹, Wendy Diment⁷, Kate Middleton⁷, Caroline Gordon¹⁰, David D'Cruz¹³, Thomas A Pollak⁵

Affiliations

¹ Department of Public Health and Primary Care Unit, University of Cambridge, Cambridge, UK.
² Unit of Rheumatology and Clinical Immunology, ASST Spedali Civili; Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.
³ Department of Neuroinflammation, UCL Queen Square Institute of Neurology, University College London, London, UK.
⁴ Swansea University Medical School, Swansea, Wales.
⁵ Institute of Psychiatry, Psychology and Neuroscience, King's College London, and South London and Maudsley NHS Foundation trust, London, UK.
⁶ Brighton and Sussex Medical school, University of Sussex, Brighton, UK.
⁷ Patient and Public Co-Investigators.
⁸ Department of Rheumatology, Kings College Hospital London, London, UK.
⁹ Behavioural and Implementation Science Group, School of Health Sciences, University of East Anglia, Norwich, UK.
¹⁰ Rheumatology Research Group, Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK.
¹¹ Department of Medicine, University of Cambridge, Cambridge, UK.
¹² Department of Neurology, Guy's and St Thomas' Hospitals NHS Foundation Trust, London, UK.
¹³ The Louise Coote Lupus Unit, Guy's and St Thomas' Hospitals NHS Foundation Trust, London, UK.

PMID: 38105443
DOI: 10.1093/rheumatology/kead685

Abstract

Objective: Neuropsychiatric lupus (NPSLE) is challenging to diagnose. Many neuropsychiatric symptoms, such as headache and hallucinations, cannot be verified by tests or clinician assessment. We investigated prioritisations of methods for diagnosing NPSLE and attributional views.

Methods: Thematic and comparative analyses were used to investigate how clinicians prioritise sources of evidence from a 13-item list, and explore discordances in clinician and patient perspectives on attribution.

Results: We identified high levels of variability and uncertainty in clinicians' assessments of neuropsychiatric symptoms in SLE patients. In attributional decisions, clinicians (surveys n = 400, interviews n = 50) ranked clinicians' assessments above diagnostic tests (many of which they reported were often unenlightening in NPSLE). Clinicians ranked patient opinion of disease activity last, and 46% of patients reported never/rarely having been asked if their SLE was flaring, despite experienced patients often having "attributional insight". SLE Patients (surveys n = 676, interviews n = 27) estimated higher attributability of neuropsychiatric symptoms to the direct effects of SLE on the nervous system than clinicians (p < 0.001 for all symptoms excluding mania), and 24% reported that their self-assessment of disease activity was never/rarely concordant with their clinicians. Reports of misattributions were common, particularly of non-verifiable diffuse symptoms. Terminology differed between clinicians and influenced attribution estimates.

Conclusion: NPSLE diagnostic tests and clinician assessments have numerous limitations, particularly in detecting diffuse neuropsychiatric symptoms that can be directly attributable and benefit from immunosuppression. Our findings suggest that incorporating patient attributional insights-although also subject to limitations-may improve attribution decision-making. Consensus regarding terminology and interpretations of "direct attributability" is required.

Keywords: CNS lupus; NPSLE; Neuropsychiatric lupus; SLE; attribution; diagnosis; diagnostic tools; misattribution; patient-clinician interactions.