New EpiPort Study Finds Higher Epilepsy Prevalence in Portugal
A national epidemiological study conducted by the Liga Portuguesa Contra a Epilepsia (LPCE) and titled EpiPort estimates that epilepsy affects about 100,993 people in Portugal, corresponding to a prevalence of 9.76 cases per 1,000 inhabitants. This figure is more than twice the prevalence identified in the last major survey, carried out around three decades ago and limited to the northern region. The new data challenge earlier assumptions and underscore a higher burden of epilepsy in the country than previously thought.
Key Findings and Their Meaning
Carla Bentes, a leading neurologist involved in the study, highlighted that the new prevalence is 2.2 times higher than earlier international and regional estimates. The project surveyed more than 10,000 Portuguese residents across the country and validated its results with a panel of epilepsy diagnostic and treatment experts. Beyond counting cases, the study reveals troubling patterns in care: about 43.7% of people with epilepsy do not receive regular medical follow-up for their condition, a gap that alarms clinicians and patient advocates alike.
Additionally, the researchers found that roughly 20% of patients had not experienced a seizure in more than 10 years, a statistic that both reassures and complicates care planning. While stability may be a goal, it raises questions about whether these patients are adequately monitored and offered ongoing treatment adjustments as needed. The data also indicate that many patients are on multiple anti-seizure medications, suggesting that additional cases of pharmacoresistant or refractory epilepsy may be present but under-recognized.
“Are people with pharmacoresistant epilepsy being followed closely enough, and are they being evaluated at one of Portugal’s five specialized centers dedicated to refractory epilepsy?” asked the study authors. The implication is clear: a substantial subset of patients may require more specialized care, yet access to such services may be uneven across the country.
Implications for Portugal’s Health System
In approximately one third of epilepsy cases, current medication does not fully control seizures, even after trying two different drug regimens. When seizures persist, the condition is labeled refractory epilepsy, a scenario that typically benefits from multidisciplinary management and, in many cases, consideration of advanced therapies. The EpiPort results call for a strategic rethink of how people with epilepsy are monitored and treated in Portugal, including standardized follow-up protocols and expanded access to specialized epilepsy centers.
LPCE officials emphasize the need to strengthen clinical pathways so that patients receive timely evaluations, dose adjustments, and alternative therapies where appropriate. The hope is that the study serves as a catalyst for evidence-based policy changes that improve long-term outcomes, reduce gaps in care, and lessen the social and economic impact of epilepsy on patients and families.
Context, Impact, and Next Steps
Epilepsy is a brain-based disorder characterized by unpredictable seizures caused by abnormal neuronal activity. While seizures are often brief, their consequences—neurobiological, psychological, social, professional, and familial—are substantial. The EpiPort study, conducted with rigorous oversight from a dedicated committee of epilepsy experts, offers a clearer picture of the disease’s footprint in Portugal and the urgent need for better continuity of care.
Researchers and clinicians hope the findings will inform policy, guiding investments in clinical surveillance, patient education, and access to specialized treatment centers. As Portugal contemplates future health planning, addressing the gap between prevalence and consistent follow-up could improve quality of life for thousands of individuals living with epilepsy.
