Condition-Related Knowledge Among Children with Spina Bifida: Longitudinal Changes and Predictors

Objective To examine changes in three domains of condition-related knowledge among youth with spina bifida and to examine the utility of youth cognitive ability level and condition severity as predictors of knowledge change. Methods Seventy preadolescents with spina bifida completed a 12-item questionnaire assessing knowledge of spina bifida at three time points during middle childhood and early adolescence. Specific domains of knowledge assessed included (a) etiology of spina bifida, (b) functional status, and (c) shunt functioning (completed by participants with shunted hydrocephalus only). Results Findings revealed gains in accuracy of knowledge on 6 of 12 items; however, neither children’s cognitive ability level nor condition severity predicted changes in knowledge over time. Most condition domains were characterized by low-to-moderate levels of knowledge across time. Conclusions Although significant gains were evident in children’s condition-related knowledge, at Time 3, many participants still failed to understand basic information about the etiology of their condition or major functional issues associated with spina bifida. Additional education about catheterization and shunt malfunction are two domains that may be of particular clinical significance.