Reference
Shields, R. H., Kaat, A., Sansone, S. M., Michalak, C., Coleman, J., Thompson, T., McKenzie, F. J., Dakopolos, A., Riley, K., Berry-Kravis, E., Widaman, K. F., Gershon, R. C., & Hessl, D. (2023). Sensitivity of the NIH Toolbox to detect cognitive change in individuals with intellectual and developmental disability. Neurology, 100(8), e778-e789. https://doi.org/10.1212/WNL.0000000000201528
Review
In their 2023 study, Shields et al. aimed to evaluate the sensitivity of the National Institutes of Health Toolbox Cognition Battery (NIHTB-CB) in detecting the cognitive change in individuals with intellectual disabilities (ID), specifically in those with fragile X syndrome (FXS), Down syndrome (DS), and other ID (OID). The study sought to provide further support for the use of NIHTB-CB as an outcome measure in clinical trials and other intervention studies targeting individuals with ID.
The researchers administered the NIHTB-CB and a reference standard cross-validation measure (Stanford-Binet Intelligence Scales, Fifth Edition [SB5]) to 256 participants with FXS, DS, and OID aged between 6 and 27 years. After two years, 197 individuals were retested. The study employed latent change score models to assess group developmental changes in each cognitive domain of the NIHTB-CB and SB5. Additionally, two-year growth was examined at three age points (10, 16, and 22 years).
Shields et al. (2023) found that the effect sizes of growth measured by the NIHTB-CB tests were comparable to or exceeded those of the SB5. The NIHTB-CB demonstrated significant gains in almost all domains in the OID group at younger ages (10 years), with continued gains at 16 years and stability in early adulthood (22 years). The FXS group exhibited delayed gains in attention and inhibitory control compared to the OID group. Meanwhile, the DS group showed delayed gains in receptive vocabulary compared to the OID group. Notably, the DS group experienced significant growth in early adulthood in two domains (working memory and attention/inhibitory control). Each group's pattern of NIHTB-CB growth across development corresponded to their respective pattern of SB5 growth.
The study's results support the sensitivity of the NIHTB-CB in detecting developmental changes in individuals with ID, making it a promising tool for clinical trials and intervention studies. However, the authors note that future research is needed to establish sensitivity to change within the context of treatment studies and to delineate clinically meaningful changes in NIHTB-CB scores linked to daily functioning.
