Predictors of caregiver health literacy and urologic adherence in families of pediatric patients with neural tube defects
Julie W. Cheng, MD, MAE1, Jennifer J. Ahn, MD, MS2, Kathleen Kieran, MD, MSc, MME2, Mark P. Cain, MD2, Margarett Shnorhavorian, MD, MPH2.
1Oregon Health and Science University, Portland, OR, USA, 2Seattle Children's Hospital, Seattle, WA, USA.
BACKGROUND: Approximately 1 in 3 caregivers in the United States exhibits limited health literacy. This has been associated with reduced medical adherence as well as poorer understanding of and clinical outcomes for chronic conditions in pediatric patients. Children with spina bifida and other neural tube defects often require complex multidisciplinary care, including urologic management to preserve renal function and optimize lower urinary tract function. The relationship between caregiver health literacy and urologic outcomes in pediatric neural tube defects has yet to be determined. The objectives of this study were to evaluate factors related to caregiver health literacy, medical adherence, and urologic outcomes in pediatric patients with neural tube defects.
Methods: This cross-sectional study was completed at a tertiary free-standing children’s hospital from July 2021 through June 2022. Caregivers of pediatric patients 10 years and younger with neural tube defects were included. Caregivers were surveyed regarding demographic information and heath literacy was measured with the validated Brief Health Literacy Screener. Medical record abstraction evaluated for medical adherence and urologic outcomes. Medical adherence was measured by historical unkept appointment rate, adherence with clean intermittent catheterization (CIC), and adherence with anti-cholinergic medications recorded in clinical documentation. Urologic outcomes were measured by estimated glomerular filtration rate (eGFR) and upper tract dilation on ultrasound. Univariate and multivariate associations were evaluated using Chi-square, Fisher’s exact, and logistic and linear regression analyses. P-value <0.05 was considered significant.
Results: There were 100 caregiver-patient dyads enrolled. Myelomeningocele was the most common diagnosis (63%) followed by lipomyelomeningocele (17%). Median patient age was 5.9 years (IQR 3.0, 8.2). Limited caregiver health literacy was associated with non-Caucasian race/ethnicity (p=0.02), interpreter use (p<0.001), public insurance status (p=0.005), and limited education attainment (p<0.001). Less adequate health literacy was associated with a higher unkept appointment rate (p=0.02). Caregiver health literacy was not associated with presence of chronic kidney disease (CKD), upper tract dilation, or adherence with anticholinergic medication or CIC. However, there were limited rates of CKD (9%) and upper tract dilation (17%) in this cohort, which limited evaluation of the relationship between caregiver health literacy and adverse urologic outcomes. Public insurance status was associated with non-adherence with CIC recommendations (p=0.019) and unkept appointment rates (p=0.008). Adjusting for health literacy, public insurance was significantly associated with upkept appointment rate (OR 3.1, 95% CI 1.2, 7.8; p=0.01).
Conclusions: Limited caregiver health literacy was associated with social determinants of health, including race/ethnicity, interpreter use, insurance status, and educational attainment. For pediatric patients with neural tube defects, unkept appointments and non-adherence with CIC were associated with limited caregiver health literacy and public insurance status. Future studies may determine the potential longitudinal relationship between caregiver health literacy, medical adherence, and urologic outcomes.
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