Parent or guardian involvement is implicit in the care of pediatric patients with hydrocephalus. Some parents and guardians are more engaged than others. The relationship between socioeconomic status (SES), the level of parental concern about their child’s hydrocephalus management and future, and overall health status has not been clearly delineated. In this study, the authors sought to clarify this connection using hydrocephalus patient-reported health outcomes.
This cross-sectional study included children with surgically managed hydrocephalus whose parent or guardian completed the validated Hydrocephalus Outcome Questionnaire (HOQ) and Hydrocephalus Concern Questionnaire for parents (HCQ-P) on a return visit to the pediatric neurosurgery clinic at Vanderbilt University Medical Center between 2016 and 2018. Patients were excluded if the questionnaires were not completed in full. The calculated Overall Health Score (OHS) was used to represent the child’s global physical, emotional, cognitive, and social health. The HCQ-P was used to assess parental concern about their child. Type of insurance was a proxy for SES.
The HOQ and HCQ-P were administered and completed in full by 170 patient families. In the cohort, 91% of patients (n = 155) had shunt-treated hydrocephalus, and the remaining patients had undergone endoscopic third ventriculostomy. The mean (± SD) patient age was 12 ± 4 years. Half of the patients were male (n = 90, 53%), and most were Caucasian (n = 134, 79%). One in four patients lived in single-parent homes or with a designated guardian (n = 45, 26%). Public insurance and self-pay accounted for 38% of patients (n = 64), while the remaining 62% had private or military insurance. In general, parents with higher concern about their child’s medical condition indicated that their son or daughter had a higher OHS (χ2 = 17.07, p < 0.001). Patients in families with a lower SES did not have different OHSs from those with a higher SES (χ2 = 3.53, p = 0.06). However, parents with a lower SES were more worried about management of their child’s hydrocephalus and their child’s future success (χ2 = 11.49, p < 0.001). In general, parents were not preoccupied with one particular aspect of their child’s hydrocephalus management.
More engaged parents, regardless of their family’s SES, reported a better OHS for their child. Parents with public or self-paid insurance were more likely to report higher concern about their child’s hydrocephalus and future, but this was not associated with a difference in their child’s current health status.