Access to Healthcare for Hydrocephalus in the United States: Analyzing the Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER).

Purpose: The hydrocephalus patient community has reported difficulties accessing medical care. The Hydrocephalus Association Patient Powered Interactive Engagement Registry (HAPPIER), a self-reported patient registry, provides a unique opportunity to examine the current landscape of healthcare access and barriers. This study aimed to identify and describe patterns in reported access to care among individuals with hydrocephalus in the United States. Methods: HAPPIER participants completed a survey which captured information about physician access and insurance information. Analyses focused on US-based respondents and included measures of insurance coverage, access to neurosurgeons and neurologists, frequency of specialist visits, first point of contact in non-emergency situations, and reported barriers due to cost. Results: HAPPIER included 606 US-based respondents. Half reported private health insurance, while 23.6% had Medicare and 20.1% Medicaid. A total of 17.2% reported lacking access to a neurosurgeon and 43.2% lacked access to a neurologist. Adults were significantly more likely than pediatric participants to lack access to specialists (23.0% vs 1.8% for neurosurgeons; 45.9% vs 36.1% for neurologists). Adults also reported less frequent visits to both neurosurgeons (p < 0.0001) and neurologists (p = 0.0013). In non-emergency situations, 50.5% of respondents identified a neurosurgeon as their first point of contact. 33.3% of participants reported financial barriers, particularly for medications (10.4%), medical specialists (9.9%), and rehabilitation services (8.4%). Adults more frequently reported difficulty accessing medications, specialists, and procedures, while pediatric patients reported more difficulty with rehabilitation services and genetic testing. Household income levels did not influence difficulty accessing care, other than for medications (p = 0.0075). Conclusion: Findings from HAPPIER highlight substantial barriers to accessing specialized care for individuals with hydrocephalus, with disparities by age and insurance type. These results underscore the need for standardized long-term care guidelines and healthcare policies that ensure equitable access to specialized providers and services for all hydrocephalus patients.