Value of Questionnaire‐Based Screening as a Proxy for Neurocognitive Testing in Childhood‐Onset Systemic Lupus Erythematosus

Abstract

Objective. To investigate the utility of questionnaire-based assessment of cognitive function and behavioral/emotional symptoms to screen for neurocognitive dysfunction in childhood-onset systemic lupus erythematosus (cSLE). Methods. Forty children with cSLE and 24 healthy controls ages 10 -16 years were enrolled. Formal neurocognitive testing (FNCT) was done to determine cognitive performance in 4 key areas that appear to be sensitive to the adverse effects of cSLE: attention, working memory, psychomotor speed, and visuoconstructional ability. Paper and pencil questionnaires sampling cognitive functioning and behavioral/emotional symptoms were also completed: the Subjective Awareness of Neuropsychological Deficits for Children (SAND-C) questionnaire by patients, and the Child Behavioral Checklist and the Behavior Rating Inventory of Executive Function (BRIEF) by parents.Results. Domain and summary scores of the BRIEF and SAND-C correlated modestly with participants' performance on FNCT. Questionnaire ratings did not discriminate subjects with different levels of cognitive ability as measured by FNCT. Conclusion. Contrary to some reports in adults with SLE, self-administered questionnaires of cognitive functioning and parent ratings of executive functioning do not appear well suited to replace FNCT in screening for neurocognitive impairment of children and adolescents with cSLE. However, they may provide information that is complementary to FNCT and therefore play a useful role in clinical followup.

Pediatric Perceived Cognitive Functioning: Psychometric Properties and Normative Data of the Dutch Item Bank and Short Form

“…The PedsPCF assesses perceived cognitive functioning, using items that are formulated as cognitive complaints. As noted previously, this type of "symptom questionnaires" is generally not found to show strong relations with neurocognitive performance tasks (Coutinho et al, 2017;Vega-Fernandez et al, 2014). Symptom questionnaires add, however, ecological validity and information on subjective complaints.…”

Cognitive Performance Scores for the Pediatric Automated Neuropsychological Assessment Metrics in Childhood‐Onset Systemic Lupus Erythematosus

“…Moreover, given the lack of a systematic screening options (i.e. physician perception and parent global impressions are insufficient to detect early cSLE associated cognitive changes) (16, 22) we consider the PedANAM-CPS indices to be an important tool for effective systematic screening for NCD in pediatric rheumatology clinics.…”

“…However, we feel it better to have a screening tool that favors false positives as this may only lead to undue referrals for FNCT of children who have normal cognitive function, and will minimize failures to identify children who truly have cognitive dysfunction. Moreover, given the lack of a systematic screening options (i.e., physician perception and parent global impressions are insufficient to detect early childhood-onset SLE-associated cognitive changes) (16,22), we consider the PedANAM-CPS indices to be important tools for effective systematic screening for NCD in pediatric rheumatology clinics.…”

“…Measurement of cognitive ability. Various approaches for the assessment of cognitive functioning have been proposed in the medical literature and for childhood-onset SLE (22). At present, there is no consensus about the most appropriate definition of a clinically relevant deficit or impairment in cognitive performance in childhood-onset SLE (23).…”

Biomarkers for CNS Involvement in Pediatric Lupus

“…In children, the one study that investigated a cognitive symptom questionnaire showed it was unable to detect disease [60]. In adults, symptom questionnaires have proven more useful as markers for NPSLE, with reported high sensitivity for the presence of disease, but only modest specificity [61].…”