Assessment of health literacy in adolescents with spina bifida and their caregivers: a multi-institutional study

Introduction: and Objective: Health literacy is defined as the ability to obtain, integrate, and appraise health-related knowledge. It is known to correlate with disparities in clinical outcomes in adults with chronic disease. Patients with spina bifida represent a potentially vulnerable cohort as they often have multiple comorbidities. The authors aimed to characterize health literacy in adolescent patients with spina bifida and their caregivers. Study design: The Newest Vital Sign (NVS), a validated assessment of health literacy and numeracy, was administered to patients (aged ≥10 years) and caregivers in outpatient pediatric urology and multidisciplinary spina bifida clinics. Subjects not fluent in English or Spanish and those with cognitive delay were excluded. Survey responses and demographic information were analyzed and compared between the spina bifida and control groups. Results: Three hundred eleven caregivers (caregivers for patients with spina bifida: 185, caregivers for the controls: 126) and 84 adolescents (those with spina bifida: 46, controls: 38) completed the NVS. Although there was no difference in health literacy between caregivers (p = 0.98), adolescents with spina bifida demonstrated lower NVS scores (spina bifida 1 [0–3] vs. control 2 [2–4]; p = 0.02) (Figure). Health literacy of patients with spina bifida and controls increased with age (p = 0.002). Adjusting for age and gender, the odds of having limited literacy were 5.5 times higher in patients with spina bifida than in the controls (p = 0.004). Inadequate caregiver health literacy was associated with a lower education level (p < 0.001). Discussion: Spina bifida is among the most complex birth defects compatible with life and affects a multitude of systems. Although it is well established that limited health literacy in adults with chronic disease is associated with adverse outcomes, there are considerably fewer data in the pediatric population. The authors found that caregivers of patients with spina bifida exhibited health literacy and numeracy comparable with parents in the control group, despite lower education levels. In contrast, adolescents with spina bifida demonstrated poorer health literacy than the controls. Multidisciplinary care is necessary, given the medical complexity of spina bifida; therefore, impaired understanding of adults’ own needs may pose a barrier to successful transition to their care and subsequent outcomes. Conclusions: The majority of surveyed caregivers for patients with spina bifida exhibited adequate health literacy, especially those with some college education; however inadequate health literacy was more likely among adolescents with spina bifida when compared with the controls. Screening for health literacy may be useful to assess readiness for transition to more independent self-care among patients with spina bifida.[Formula