EpilepsyPOWER: results from a three-year project to favour workplace inclusion of People with Epilepsy

Background. Epilepsy is a chronic disorder affecting all aspects of individual life. The majority of people with epilepsy (PwE) are well controlled with antiseizure medication. However, epilepsy is more than seizures and there is a significant body of research that has documented the comorbidities of the epilepsy including issues such as social integration. Unemployment and underemployment for example are markedly more common in PwE compared to the general population. The “EpilepsyPOWER” is a European project, involving five countries (Italy, Bulgaria, France, Ireland, Germany), aimed to improve PwE workplace inclusion. Central to the project was the development of a review depicting the employment situation for PwE. The project also involved the creation of surveys, learning modules and an epilepsy-friendly label potential users. Methods. A systematic review on epilepsy and employment as part of EpilepsyPOWER Erasmus+ project (2021-1-IT02-KA220-ADU-000028349) was conducted. The search string employed was “Epilepsy AND Employment OR Job OR Work”. Using the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA 2020) guidelines, 7272 articles were screened, and 55 articles were selected from 1958 to 2023. Data was extrapolated on employment rate and status, also considering people with specific epileptic syndromes. Finally, factors contributing to employment and unemployment were selected. Two anonymous surveys were developed asking for PwE employment conditions, stigma and disclosure, and Higher Education Institutions (HEI) general knowledge and attitudes about epilepsy. Results. The review identified unemployment rates ranging from similar to twice to three times the rates of the general population, depending on the countries and years examined. When analysing factors contributing to employment conditions, most papers highlighted the importance of seizure control and employers’ attitudes. There were 567 responses from PwE and 291 from HEI. Reported unemployment rates were: 7,9% in Italy, 6,7% Ireland, 8,5% France, 15% Germany, 9% Bulgaria; people fully employed: 42,9% in Italy, 53% Ireland, 31,7% France, 40% Germany, 47,9% Bulgaria. As for disclosure, in Italy 19% of PwE did not disclose their condition, whereas in Bulgaria 48,5% did not. As regards HEI, they correctly defined epilepsy as a neurological disorder, treatable in most cases. They know the general concept of epilepsy, but they do not know how to give medical aid to a person experiencing a seizure. Conclusion. Developing specific legislation and programs to include PwE in the workplace could help support social integration. Further, seizure control seems to be the most relevant factor influencing the possibility of getting and maintaining a good job, demonstrating the importance of providing continuous follow-up and the best medical care to all PwE. Exploring PwE work conditions and HEI perspectives could help to spread a good culture of inclusion and fight marginalization of PwE in workplaces, allowing them to get the right job positions and better quality of life.