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. Plain Language Summary: Hydrocephalus is a chronic condition that often requires lifelong medical care, yet many patients face challenges accessing the specialists and services they need. To better understand these and other challenges, the Hydrocephalus Association created the Hydrocephalus Association Patient Powered Interactive Engagement Registry (HAPPIER), where patients and caregivers report on their healthcare experiences. This study analyzed responses from 606 people in the United States. Half of the participants had private insurance, about one in four had Medicare, one in five had Medicaid, and a small number (1.8%) reported no insurance at all. Many reported problems accessing specialists: 17% said they did not have access to a neurosurgeon, and 43% did not have access to a neurologist. Adults were more likely than children to report lacking access, and they also reported seeing their specialists less often. In non-emergency situations, half of participants said they would first contact a neurosurgeon if they suspected a hydrocephalus-related problem. Cost created another major barrier. One in three participants said high cost kept them from getting care, especially medications, rehabilitation services, and visits with specialists. Adults most often reported problems paying for medications, procedures, and specialist visits, while children more often reported challenges accessing rehabilitation services and genetic testing. These findings show that people with hydrocephalus struggle to access the specialized care they need, often because of insurance type or financial barriers. More consistent healthcare guidelines and policies are needed to make sure all patients can get timely, affordable, and appropriate care. Keywords: hydrocephalus, access to care, healthcare barriers
Miller et al. (Sun,) studied this question.