Despite broad recognition of its importance, cognitive screening and neuropsychological evaluation are not consistently implemented in routine care for children and young adults with childhood-onset systemic lupus erythematosus, according to a survey study.
Researchers surveyed members of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) to assess current knowledge, clinical practices, and barriers related to cognitive assessment. The cross-sectional survey included rheumatologists and trainees involved in the care of patients younger than 21 years.
Cognitive dysfunction affects an estimated 30% to 60% of patients with childhood-onset systemic lupus erythematosus (SLE) and has been associated with impaired academic performance, reduced quality of life, and challenges with treatment adherence. However, the study identified a gap between clinicians’ beliefs and their routine clinical practices.
Among 109 respondents, 94% reported that cognitive dysfunction is common in childhood-onset SLE, and 93% indicated that the medical literature supports routine screening. Still, only 61% reported regularly asking about cognitive concerns during clinic visits, and about 27% reported using any standardized screening method.
Use of comprehensive neuropsychological evaluation was even less common. Only 8% of respondents reported routine use, while more than half indicated that patients were rarely or never evaluated with formal neuropsychological testing.
Several practical barriers limited implementation. Clinicians cited uncertainty about administering and interpreting screening tools, time constraints during clinic visits, and challenges with billing and reimbursement. Limited access to neuropsychological services was also a key barrier, with reported wait times averaging more than 7 months.
The findings highlight a disconnect between perceived clinical importance and real-world feasibility. As the authors noted, “it is difficult work to screen for or identify a problem that cannot be addressed,” underscoring concerns about limited resources for follow-up evaluation and management.
Addressing these challenges will likely require multiple strategies, including the development of streamlined screening tools, improved access to neuropsychological services, and clearer guidance on implementation. The authors also suggest that consensus recommendations may help standardize when and how cognitive assessment should be incorporated into routine care.
Author disclosures are available at https://onlinelibrary.wiley.com/doi/10.1002/acr2.90009.
Source: ACR Open Rheumatology
