New HAPPIER Study Highlights Challenges in Accessing Care

A new study titled Access to Healthcare for Hydrocephalus in the United States: Analyzing the Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER), published in the journal Risk Management and Healthcare Policy, sheds light on the real-world challenges many people with hydrocephalus face when trying to access medical care in the United States.

HAPPIER is a patient-reported registry led by the Hydrocephalus Association, where individuals with hydrocephalus and their caregivers share diagnosis, treatment, and healthcare experiences, and more. In this study, more than 600 participants helped researchers better understand who people turn to for care, how often they see specialists, and what barriers stand in the way.

What did the study find?

• Many adults struggle to find specialists. Almost 1 in 4 adults reported they do not have access to a neurosurgeon, and nearly half said they do not have access to a neurologist. These challenges were less common for children.
• Adults see specialists less often. Even when adults do have access to a neurosurgeon or neurologist, they reported fewer routine visits compared to pediatric patients.
• Insurance affects where people seek care. In non-emergency situations, about half of participants said they would contact a neurosurgeon first. However, people with Medicaid were more likely to report going to the emergency room, which may reflect difficulty finding providers who accept their insurance.
• Cost remains a major barrier. One-third of participants reported difficulty getting care because of high out-of-pocket costs, especially for medications, specialist visits, and rehabilitation services. These challenges affected families across income levels, not just those with lower incomes.

Why is this important?

Hydrocephalus is a lifelong condition, and regular access to knowledgeable providers is critical. This study shows that having insurance does not always mean having access, and that adults with hydrocephalus, in particular, may face gaps in ongoing care.

These findings highlight the need for better long-term care planning, smoother transitions from pediatric to adult care, and healthcare policies that make it easier for people with hydrocephalus to get the care they need, when they need it.

Your participation in HAPPIER helps make this research possible and strengthens the collective voice of the hydrocephalus community. Together, these data can help drive changes that improve care for everyone living with hydrocephalus.
Join HAPPIER today: hydroassoc.org/join-the-hydrocephalus-patient-registry!