Profile of individuals with full-scale intelligence quotient (FSIQ) scores in the National Spina Bifida Patient Registry (NSBPR).
Heidi Castillo, Sophia Drewry, Amy Heffelfinger and 11 others
Most people with spina bifida in this US registry have no IQ score on file.
The only factor linked to having one is prior school accommodations. Those tested averaged 81.3, below the general population average — a gap that should prompt routine cognitive screening.
Key findings
1In the analytic sample, 435 individuals (42.7%) had an FSIQ score while 582 (57.3%) did not.
2After adjusting for sex, race, insurance, lesion level, shunt history, and clinic, the only factor consistently associated with having an FSIQ score across all age groups was a history of academic accommodations (some: OR 1.97; full-time: OR 1.83).
3The mean FSIQ score was 81.3 (SD 16.9), and 23% of individuals scored at or below 70, the cutoff for intellectual disability.
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What it does not show
Data come from only five NSBPR clinics, so findings may not generalise to all individuals with spina bifida or all registry sites. At those five sites, 57% of individuals still had no FSIQ score entered, and the source of the score (healthcare setting vs. school records) was not recorded, making it impossible to know whether testing occurred elsewhere. FSIQ scores were derived from different intelligence tests (Wechsler, DAS, KBIT), and the validity of each for this population was not assessed. A single composite FSIQ score may mask the wide range of performance across cognitive domains that is typical in spina bifida (processing speed, visual-spatial, executive function, verbal knowledge). Age was defined differently between groups (age at test vs. age at last visit), which the authors acknowledge could account for the age difference between groups. The study is descriptive and cross-sectional; it cannot establish whether academic accommodations lead to IQ testing or whether IQ testing is part of the accommodation evaluation process.
Declared interests
Funded by the National Center on Birth Defects and Developmental Disabilities, CDC (grants DD000738 through DD001280). The authors declared no potential conflicts of interest.
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