Agreement between parent- and self-report of executive functioning in childhood-onset systemic lupus erythematosus: implications for clinical practice

Systemic lupus erythematosus (SLE) is a chronic autoimmune disorder, with childhood onset (cSLE) impacting 15-20% of all individuals with SLE. Cognitive dysfunction, including difficulties with executive functioning (EF), affects 30-70% of individuals with cSLE. EF describes cognitive processes that support goal-directed behavior and contributes to capacity for disease self-management and quality of life. Standardized questionnaires provide clinically valuable information about parental observations and adolescent's self-awareness, however, agreement between adolescent and parent ratings is not yet well understood in cSLE. Thirty-six adolescent-parent dyads completed the Behavior Inventory of Executive Function, Second Edition (BRIEF-2). Intraclass correlation coefficients (ICCs) indicated moderate agreement among most indices and subscales, with the exception of the Emotional Regulation Index and Shift subscale. However, mean T-score comparisons showed that adolescents rated themselves as having significantly greater difficulties compared to parent report on the Global Executive Composite, Behavioral Regulation Index, and Cognitive Regulation Index and the Inhibit, Emotional Control, Working Memory and Planning/Organization subscales. Our findings demonstrate that alongside parental report, considering the adolescent's own perspective of their cognitive functioning is an essential part of assessing EF in cSLE.