Cognitive Screening and Neuropsychological Evaluation in Children and Young Adults With Childhood-Onset Systemic Lupus Erythematosus: A Survey of Rheumatologists.

OBJECTIVE

To assess current beliefs and clinical practice in rheumatology around cognitive screening and neuropsychological evaluation in youth with childhood-onset systemic lupus erythematosus (cSLE).

METHODS

A cross-sectional survey study was conducted among rheumatologists and trainees of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) who care for individuals with cSLE <21 years old. This survey assessed provider knowledge, beliefs, and practices around cognitive screening and neuropsychological evaluation. The presence and absence of barriers to screening (n = 11) and evaluation (n = 8) were also assessed.

RESULTS

Of 443 eligible CARRA members, 109 (25%) completed the survey. The majority of respondents thought that cognitive dysfunction was common in cSLE (94%), had long-term effects on a patient's health (100%), and that the medical literature supported routine screening for cognitive dysfunction (93%). However, only 61% routinely asked about or screened for cognitive concerns during clinic visits, and only 28% felt able to adequately address cognitive concerns. Barriers to performing cognitive screening included uncertainty with administration, interpreting results, billing, and the time available to complete it. Routine neuropsychological evaluation was rare (8%), and more than half (54%) reported that their patients were rarely or never evaluated. Barriers to neuropsychological evaluation included difficulty accessing these services and the time required for the assessment.

CONCLUSION

Rheumatologists believe cognitive screening and neuropsychological evaluation are important components of care for youth with cSLE but face multiple barriers related to limited training, time, and access to appropriate services. Future work addressing these barriers will support these providers and improve care for patients with cSLE.