Condition-related knowledge among children with spina bifida: longitudinal changes and predictors

Area of Science:

• Pediatric neurology
• Developmental psychology
• Health sciences

Background:

• Spina bifida is a complex congenital condition requiring ongoing management.
• Youth with spina bifida need to understand their condition for self-management.
• Knowledge about spina bifida can impact health outcomes and quality of life.

Purpose of the Study:

• To assess changes in condition-related knowledge among youth with spina bifida.
• To evaluate cognitive ability and condition severity as predictors of knowledge change.
• To identify specific knowledge domains requiring targeted educational interventions.

Main Methods:

• Seventy preadolescents with spina bifida completed a 12-item questionnaire.
• Knowledge was assessed at three time points spanning middle childhood to early adolescence.
• Domains included etiology, functional status, and shunt functioning.

Main Results:

• Knowledge accuracy improved for 6 out of 12 items over time.
• Neither cognitive ability nor condition severity predicted knowledge changes.
• Most participants demonstrated low-to-moderate knowledge levels across all domains and time points.

Conclusions:

• Despite some gains, youth with spina bifida often lack basic understanding of their condition.
• Key areas for improvement include etiology, functional issues, catheterization, and shunt malfunction.
• Targeted educational strategies are crucial for enhancing condition-related knowledge in this population.