Profile of individuals with full-scale intelligence quotient (FSIQ) scores in the National Spina Bifida Patient Registry (NSBPR).

PurposeAlthough intelligence quotient (IQ) testing can help identify cognitive issues, data on IQ testing in the spina bifida (SB) population is limited and difficult to collect. This study aimed to identify factors influencing IQ test reporting among individuals in the National Spina Bifida Patient Registry (NSBPR).MethodsA descriptive analysis of 1,017 individuals aged 4 to 22 years from five NSBPR clinics was conducted. Characteristics of participants with a full-scale intelligence quotient (FSIQ) score (n=435) were compared to those without (n=582). Multivariable logistic regression was used to calculate odds ratios (ORs) and 95% confidence intervals (CIs) to determine the likelihood of having an FSIQ score, adjusting for sex, race, ethnicity, insurance status, functional level of lesion, and clinic.ResultsIndividuals who received full-time (OR=1.83, 95% CI: 1.16, 2.88) or some (OR=1.97, 95% CI: 1.38, 2.82) academic accommodations were more likely to have an FSIQ score. The mean age at IQ testing was 9.7 years (SD: 4.0), and mean FSIQ score was 81.3 (SD: 16.9).ConclusionHistory of academic accommodation was associated with having FSIQ scores. Average FSIQ score was lower than the normative population, highlighting the need for broader testing and care among people with SB.