What the EpiPort study found
A major epidemiological study released this week by the Liga Portuguesa Contra a Epilepsia (LPCE) updates how many people live with epilepsy in Portugal. The EpiPort study estimates about 100,993 individuals with epilepsy nationwide, translating to a prevalence of 9.76 cases per 1,000 inhabitants. This figure more than doubles the 4.4 per 1,000 identified in the last national estimate, carried out roughly thirty years ago and restricted to the northern region.
LPCE president (former) Carla Bentes highlighted that the new data overturn a prior belief that Portugal had a relatively low prevalence of epilepsy compared with other European countries and global estimates. “We have a prevalence 2.2 times greater than previously thought,” she said in discussing the study’s implications. The survey canvassed more than 10,000 participants across the country and validated results with a panel of epilepsy diagnosis and treatment experts.
Prevalence and what it means for care
The estimated 100,993 epilepsy cases across Portugal point to a substantial public health burden. The stark contrast with older regional figures underscores the need to reassess healthcare planning, resource allocation, and patient support across the nation. The study’s scope and design—national reach with expert validation—aim to provide a clearer picture of how many people live with epilepsy and the real-world challenges they face.
Care gaps and follow-up challenges
One of the most striking findings is not just how many people have epilepsy, but how few receive consistent medical follow-up. About 43.7% of those with epilepsy reported lacking regular clinical follow-up for their neurological condition. The researchers describe this gap as alarmingly high and urge healthcare systems to establish stronger pathways for ongoing care, monitoring, and timely adjustments to treatment plans.
In addition, roughly one in five patients had not experienced a seizure for more than a decade, a statistic that raises questions about how many long‑term patients are still under regular clinical review and whether their care aligns with current guidelines for epilepsy management.
Epilepsy treatment patterns and possible refractoriness
The study also found that many patients are taking multiple anti-seizure medications, suggesting a substantial subset may have epilepsy that is pharmacoresistant (refractory). This condition, where seizures persist despite adequate trials of multiple medications, is not just a clinical label but a driver of additional health system needs, including access to specialty care and potential referral to dedicated epilepsy centers.
Portugal currently hosts five dedicated epilepsy centers designed to evaluate and manage refractory cases. The study’s leadership questions whether all patients who may benefit from such centers are being identified and referred appropriately, highlighting a gap between available services and those who might need them most.
Impacts on people and families
Beyond the clinical metrics, epilepsy carries a wide-ranging impact on neurobiological health, mental well-being, social participation, work prospects, and family life. The LPCE emphasizes that the consequences extend far beyond seizures themselves, affecting daily routines, education, and employment opportunities for many individuals and their loved ones. The new prevalence data thus serves as a call to action for more comprehensive support structures, including psychosocial services, caregiver resources, and public awareness campaigns.
Policy implications and the road ahead
With EpiPort offering a more accurate landscape of epilepsy in Portugal, scientists and policymakers are urging a rethinking of how the condition is tracked and treated. Key recommendations include expanding access to regular follow-up, improving continuity of care across primary and specialist services, and ensuring accessible pathways to epilepsy centers for those with pharmacoresistant epilepsy. The study’s consortium hopes it will catalyze measures that improve clinical management and, ultimately, patient quality of life.
Conclusion
Portugal’s updated epilepsy tally reflects a higher burden than previously recognized and spotlights substantial gaps in follow-up and specialist care. By translating robust epidemiological data into actionable health policies, Portugal has the opportunity to improve outcomes for tens of thousands of people living with epilepsy and their families.
