Background/Purpose: Neuropsychiatric involvement in Systemic Lupus Erythematosus (NPSLE) is a major cause of morbidity and mortality, particularly among children who are still developing neurologically. Despite this high burden of NPSLE in children it is arguably the least understood manifestation of SLE. Additionally, the care needs of children with NPSLE are complex, requiring multidisciplinary services with varying levels of accessibility. We aimed to understand the current practice of care for evaluation of NPSLE in children, and barriers in accessing multidisciplinary care.

Methods: An electronic survey was conducted among members of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) from July to November 2024. It was designed by the CARRA Neuropsychiatric SLE Workgroup, which includes pediatric rheumatologists, neurologists, psychiatrists, psychologists, patients, and caregivers. Eligible participants included physicians, nurse practitioners, and physician assistants who actively care for children with SLE. We collected information on demographics, serum biomarkers, neuroimaging, availability of multidisciplinary support services and barriers to care for patients with NPSLE (15 barriers rated on 5-point Likert scale)

Results: Of the 512 eligible respondents, 149 (29%) completed the survey. The findings revealed that only 5% of respondents felt completely confident in evaluating NPSLE on a 5-point Likert scale. The majority (90%) routinely test for antiphospholipid antibodies during the initial evaluation, while fewer test for anti-ribosomal P (46%), anti-neuronal antibodies (18%), aquaporin-4 antibodies (10%), and antiganglioside antibodies (4%). Among those who responded, 19% obtain cerebrospinal fluid (CSF) analysis for all patients with suspected NPSLE, and 41% use neuroimaging. The most common neuroimaging modality was brain MRI, MRV, and MRA with or without contrast (46%), followed by brain MRI with or without contrast (43%). Only 22% of responders use advanced neuroimaging, 31% lack access to advanced imaging at their institution, and 52% were not familiar with the appropriate indications or interpretation of these imaging modalities. Furthermore, 57% screen for mood disorders in all NPSLE patients (Table I). Only 7% of providers have easy access to neuropsychology, and 10% to psychiatry. Waiting time to access neuropsychology, psychiatry and lack of protocol or guidelines were the most common perceived barriers for the evaluation of NPSLE.

Conclusion: This study highlights significant variability in current practices for evaluating NPSLE in children, underscoring the need for consensus guidelines to standardize NPSLE evaluation and management Improving timely access to neuropsychology and psychiatry services is essential for proper diagnosis and treatment of NPSLE. Given that these services are often very limited, providing training to rheumatology clinicians on less resource-intensive alternatives (e.g Ped-ANAM validated computerized screening neurocognitive battery or questionnaires) may assist in triaging priority patients for multidisciplinary assessment.

Magnetic Resonance Imaging (MRI), Patient-Reported Outcomes Measurement Information System (PROMIS)

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/neuropsychiatric-lupus-in-children-and-adolescents-understanding-current-practices-and-barriers-to-care-perceived-by-pediatric-rheumatology-clinicians-in-north-america/