Key findings from the EpiPort study
A new epidemiological study, EpiPort, coordinated by the Liga Portuguesa Contra a Epilepsia (LPCE), projects that about 100,993 people in Portugal live with epilepsy. The research calculates a prevalence of 9.76 cases per 1,000 inhabitants, a figure that more than doubles the 4.4 per 1,000 identified in a previous study conducted mainly in the northern region about 30 years ago. This new estimate challenges earlier assessments and aligns Portugal more closely with epilepsy prevalence levels seen in other European countries and global reports.
The study involved a national survey of more than 10,000 people across Portugal and was supported by a panel of epilepsy specialists who validated the results. The overarching goal was to obtain a clearer picture of how common epilepsy is in the country and to inform health policy and clinical practice. While the total number of cases is substantial, the findings also underscore how many patients navigate the condition without consistent medical follow-up.
Prevalence higher than expected
One of the striking outcomes is that the prevalence of epilepsy in Portugal appears to be about 2.2 times higher than previously reported for the nation. This revelation reframes the public health impact of epilepsy in Portugal and places renewed emphasis on tracking, diagnosis, and ongoing management of the condition. The researchers stress that the higher prevalence is not simply a matter of identifying more cases; it also reflects the broader distribution of epilepsy across the country and a greater need for accessible neurological care.
Gaps in follow-up care
Despite identifying a large number of people living with epilepsy, the study found that roughly 43.7% of these patients do not have adequate ongoing medical follow-up for their neurological condition. This gap raises concerns about monitoring, adjustment of therapies, and the timely management of potential complications. The neurologist leading the study emphasizes that a lack of follow-up can undermine treatment effectiveness and quality of life, even when patients are technically under a treatment plan.
Medication and potential refractoriness
Another important finding is that many patients are taking multiple antiseizure medications. The use of several drugs suggests that a portion of the epilepsy population may have drug-resistant (refractory) epilepsy, a condition where seizures persist despite standard therapies. The study questions whether all individuals with suspected refractory epilepsy are being assessed at one of Portugal’s five dedicated centers for drug-resistant epilepsy. Ensuring access to specialized evaluation may help identify cases where treatment needs to be adjusted or escalated to improve seizure control.
Implications for care and policy
With nearly one in three people living with epilepsy experiencing inadequate seizure control with current regimens, the LPCE argues for a rethink of how epilepsy is managed in Portugal. The researchers advocate wider and more consistent clinical follow-up, better integration of epilepsy care across neurology services, and stronger referral pathways to the country’s specialized centers. The study’s authors hope that its findings will catalyze concrete measures to enhance the clinical management of epilepsy, reduce untreated or undertreated cases, and support patients in navigating the social and psychological consequences of the condition.
Why this matters for patients and families
Epilepsy is a brain-based disease characterized by sudden, unpredictable seizures. Its impact goes beyond neurological symptoms, affecting mental health, social participation, education, work, and family life. The EpiPort results remind healthcare planners, clinicians, and patient groups that epilepsy care requires not only accurate diagnosis but also sustained, patient-centered follow-up and access to specialized resources. As Portugal looks to improve its health system, prioritizing epilepsy care could reduce the burden on patients and families and improve overall health outcomes.
About the study and next steps
The EpiPort study was conducted with rigorous oversight from epilepsy experts and included validation steps to ensure the reliability of survey responses. While the findings are significant, researchers acknowledge limitations inherent to population-based studies and emphasize the need for ongoing surveillance, data collection, and policy action. The LPCE plans to use the results to advocate for better clinical pathways, more support services for people with epilepsy, and continued research into effective treatments and care models.
