COGNITIVE screening remains underused in childhood lupus care despite strong rheumatologist concern about long-term patient impact.
Cognitive Screening in Childhood Lupus Care
Rheumatologists widely recognize cognitive dysfunction as a major concern in childhood-onset systemic lupus erythematosus, but clinical practice has not kept pace with that concern. In a cross-sectional survey of 109 rheumatologists and trainees caring for patients with childhood-onset systemic lupus erythematosus under 21 years of age, 94% reported that cognitive dysfunction is common, 100% agreed it has long-term effects on health, and 93% believed the literature supports routine cognitive screening.
Despite this broad agreement, only 61% routinely asked about or screened for cognitive concerns during clinic visits. Even fewer used standardized tools. Just 27% reported using a standardized cognitive screening measure or questionnaire, and only 8% used one during most or all clinic visits.
The gap is clinically important because cognitive dysfunction in childhood-onset systemic lupus erythematosus can affect education, employment, socialization, self-care, medication adherence, and quality of life. Earlier identification may allow academic support, therapy support, or targeted intervention when neuroinflammation or neurologic injury is suspected.
Barriers Limit Routine Cognitive Screening
The survey found that rheumatologists face practical barriers that make cognitive screening difficult to implement. Common obstacles included uncertainty about billing, reported by 83%; uncertainty about how to use or interpret results, reported by 82%; lack of experienced providers to administer screening, reported by 81%; and insufficient clinic time, reported by 79%.
Respondents also emphasized that any usable screening measure would need to be brief, accurate, easy to administer, and require minimal training. When families had not raised cognitive or academic concerns, providers considered a median of 5 minutes an appropriate amount of clinic time for cognitive screening.
Neuropsychological Evaluation Remains Difficult to Access
Routine neuropsychological evaluation was uncommon. Only 8% of respondents reported routine monitoring with standardized neuropsychological evaluations, and 54% said their patients rarely or never participated in such evaluations. Most evaluations were reserved for patients with cognitive or academic concerns, a history of neuropsychiatric systemic lupus erythematosus, or other symptoms suggesting neuropsychiatric involvement.
Access barriers were substantial. Long wait times were reported by 93% of respondents, with an estimated average wait of 7.5 months. Limited insurance coverage, long assessment duration, and lack of local neuropsychologists familiar with childhood-onset systemic lupus erythematosus also limited use.
Broader Implications for General Health
The findings point to a wider general health issue: cognitive symptoms in chronic pediatric disease may be recognized as important but still go insufficiently assessed when clinic workflows, access, and reimbursement do not support routine evaluation.
Only 28% of respondents felt able to adequately address cognitive concerns in patients with childhood-onset systemic lupus erythematosus. The authors concluded that education, feasible screening tools, better access to neuropsychological evaluation, and consensus guidance may help rheumatologists identify cognitive dysfunction earlier and improve long-term outcomes for children, adolescents, and young adults with lupus.
Reference
Kammeyer R et al. Cognitive Screening and Neuropsychological Evaluation in Children and Young Adults With Childhood-Onset Systemic Lupus Erythematosus: A Survey of Rheumatologists. ACR Open Rheumatol. 2026;doi:10.1002/acr2.90009.
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