Neuropsychological performance labels: do patients understand?

OBJECTIVE Descriptive labels to communicate performance are integral in neuropsychological reports. Although the American Academy of Clinical Neuropsychology (AACN) reached consensus on standardizing uniform labels of performance, consumer understanding of these labels is unclear. This pilot prospective cohort study evaluated patient, family member, and medical provider understanding of neuropsychological performance labels. METHOD Patients (n = 62), family members (n = 31), and referral sources (n = 34) completed a 13-question survey evaluating the uniform label system and an alternative, patient-centered language system (PCL). Questions assessed label knowledge and associated percentiles and relative relationships between labels. RESULTS Patients had significantly higher accuracy on knowledge questions using PCL labels (54.8%) versus AACN labels (32.2%) as were families (51.6% versus 35.5%). When ranking labels, providers and patients were more accurate when using PCL labels compared to AACN labels, although no significant difference was seen in the family group. Generally, participants were more accurate in identifying highest/lowest scores using AACN labels and more accurate in identifying relatively higher and lower scores using PCL terminology. CONCLUSIONS Results illustrate that current and alternative score labels may not be understandable for audiences who read and base decisions on neuropsychological reports. The findings highlight the need for further consideration of patient-centered language to improve understanding of neuropsychological score labels.