| Summary: | Objective: In collaboration with the Hydrocephalus Association, we assessed caregivers’ ability to identify symptoms related to shunt, ETV, or ETV/CPC failure, in addition to sociodemographic factors that influence health-seeking behaviors. Methods: We conducted a national survey of 181 primary caregivers who sought hydrocephalus care within the previous year. Surveys assessing recognition of related shunt/ETV failure symptoms (amongst unrelated symptoms) were voluntarily completed. Demographics and socioeconomic characteristics were captured. Descriptive statistics and regression analyses were conducted using R (3.3.1). Results: Over half (80%) of caregiver’s were 30 or older, and 68% completed college. Seventy-three percent reported a minimum household income of $45,000. Median age of children was 7.2 years (IQR1: 2.1, IQR3: 13.3), and median number of hydrocephalus surgeries was 4 (Q1: 3, Q3: 7). Related failure symptoms were accurately identified 91.5% of the time. Treatment was sought significantly sooner for vomiting and abnormal eye movement, as compared to other presenting symptoms (p < 0.001). Among those seeking care within one day, 50% noted a household income of $75,000 or more. Increased work hours, household siblings, and child’s age and grade in school were correlated with delays in seeking care. Increased number of household adults was significantly correlated with delays in care (p = 0.04). Conclusion: This study highlights important factors that influence a caregiver’s decision to seek hydrocephalus care. Family structure, financial resources, and overall knowledge of hydrocephalus and related failure symptoms are key indicators. Better understanding of the interplay of these factors may lead to timelier evaluation and potential improvement in patient outcomes.
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