- Quality of epilepsy care is often lacking across Europe with up to 40% of people with epilepsy remaining untreated (up to 90% in some areas)
- Stigma and marginalization continue to play a significant role in isolating and restricting people with epilepsy whether in school settings, at work or in society in general
- Barriers for epilepsy research include lack of consistent epidemiological data, complicated regulatory processes, insufficient funding, and cultural stigma
Milan/Brussels, July 21, 2022 – The European House – Ambrosetti, an Italian Think Tank, together with Angelini Pharma, an international pharmaceutical company which is part of the privately-owned Angelini Industries, today presented their latest Headway report titled Headway: A new roadmap for Brain Health – Focus Epilepsy. Key findings of the report highlight that, given the differences in European healthcare systems, the implementation of epilepsy policies has been uneven. There appears to be a significant variability in the availability, accessibility and quality of care provided. The new report outlines why the European epilepsy community needs to act now and provides an initial roadmap for doing so.
The report focuses on outcomes of the Headway initiative that examined various European experiences in the management of epilepsy, launched early 2022. It is aimed at contributing to reducing the burden of epilepsy not only in the healthcare sector, but also in workplaces, schools and society in general through sharing knowledge and know-how. It outlines a number of priority areas of intervention for key audiences including healthcare providers, researchers, patient associations and policy makers within European member states, which were developed in collaboration with a multidisciplinary expert group, including clinicians, researchers and patient support groups, to ensure a comprehensive and integrated approach. The report follows the previous Headway initiative which focused on Mental Health.
“Epilepsy is recognized as one of the most common neurological disorders, however, thanks to research like this we now also know the health impact of neurological diseases overall has been underestimated for years,” said Pierluigi Antonelli, Chief Executive Officer, Angelini Pharma. “This report is an important milestone and brings to light that there is still a clear lack of awareness about epilepsy across Europe.”
A critical issue facing people with epilepsy identified in the report is the lack of access to quality care in Europe. Due to great variability between level of urbanization and socioeconomic factors, the treatment gap between European countries is considerable, with up to 90% of patients missing out on treatment in some areas, while the European average lies around 40%, emphasizing the need for more cost‐effective epilepsy care programs across Europe.
The social functioning of people living with epilepsy is described in the report as heavily impacted by the treatment gap. The report identifies stigma associated with epilepsy as a critical issue facing people living with the condition, contributing to poor physical and mental health, with 51% of adults surveyed feeling stigmatized, 18% of which highly so. It was found that stigma can delay patients seeking appropriate health care, impact access to care, the financing of healthcare and affect the availability of treatment options. While the causes of stigma vary, in general research revealed a low level of knowledge and poor understanding as well as lack of public awareness of the disease, often resulting in low institutional preparedness or even discrimination.
“The Headway epilepsy report highlights the detrimental impact that stigma associated with epilepsy continues to have across Europe,” said Francesca Sophia, President, International Bureau of Epilepsy. “Identifying the scope and nature of this problem is a first move in changing attitudes and addressing the social marginalization encountered by many people who experience seizures.”
The report furthermore reveals that more than one in five people with epilepsy isolate themselves from society because of anxiety about possible adverse reactions to public seizures that might lead to accidents. As the COVID-19 pandemic continues to embed itself in our lives, the magnitude of disruptions and additional stresses to the epilepsy community are clearly noticeable, as the report findings show. The restriction of clinical care has had a significant impact, with a 75% reduction in the number of EEGs during the crisis compared to pre-COVID times in Italy alone. As patients experienced increased levels of stress throughout the pandemic, the report demonstrated that 30% of patients suspended hospital treatments and lower social support as well as social isolation may continue to reduce treatment adherence as well as worsen seizure control.
The report furthermore points out the issues around diagnostic delays due to late or incorrect diagnoses. “Misdiagnosis affects 20–30% of patients with epilepsy and can delay effective management of this condition, with long-term consequences for the health and wellbeing of patients and their families,” said Philippe Ryvlin, Head of the Department of Clinical Neurosciences, Lausanne University Hospital. “This emphasizes the crucial importance of pan-European collaboration in training and research to advance the standard of care for people with epilepsy.”
The report identifies a number of barriers for successful research into epilepsy, including a lack of consistent epidemiological data, complicated regulatory processes, insufficient funding for research into epilepsy and cultural stigma. It further highlights the crucial importance of multidisciplinary teams (MDTs), in the management and support of people living with epilepsy but also notes the total absence of these teams in some European countries.
“Epilepsy is still highly misunderstood in many countries. Creating a multidisciplinary, inter-European platform to stimulate dialogue and knowledge sharing around the most prominent issues in the healthcare sector, but also in workplaces, schools and society in general with the objective of contributing to reducing the burden of disease in Europe is a vital step,” said Daniela Bianco, Partner and Head of the Healthcare Practice of The European House – Ambrosetti. “Our continued collaboration with Angelini Pharma on the Headway initiatives is critical to advancing our knowledge and developing a new roadmap for brain health in Europe. With the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) having been approved earlier this year, now is the time for us to act!”
The report results suggest opportunity for key stakeholders of European member states including healthcare providers, researchers, patient associations and policy makers to develop a roadmap and intervene to promote collaboration and a more holistic approach to tackle reducing the burden of epilepsy.
To learn more about Headway: A new roadmap for Brain Health – Focus Epilepsy or to download the full report, please visit: https://eventi.ambrosetti.eu/headway-epilepsy/
For further queries, please contact:
Daniela Poggio – Global Communications Executive Director, Angelini Pharma, email@example.com
Elisa Milani – Project Coordinator and Consultant, Healthcare Area, The European House – Ambrosetti, firstname.lastname@example.org
The Headway initiative addresses important issues in brain health across Europe. It was originally launched with a focus on mental health in 2017 by the Italian Think Tank The European House – Ambrosetti in partnership with Angelini Pharma with the aim of creating a multidisciplinary platform for strategic reflection, analysis, dialogue, and comparison between various European experiences in the management of individuals affected by mental disorders. It was activated in line with programs, activities and plans of the WHO and international institutions, aimed at providing a more European perspective. Since its inception, the Headway initiative has grown to include several studies, reports and activities dedicated to advance discussions on European level around mental health services and management of individuals affected by mental health disorders across Europe, creating a sustainable roadmap for mental health.
“Headway: A new roadmap for Brain Health – Focus Epilepsy” is the latest addition to the Headway initiative, focussing on advancing our understanding of the status quo of the management of epilepsy across Europe with the aim of developing a succinct roadmap for epilepsy.
For more information on the Headway initiative, please visit https://eventi.ambrosetti.eu/headway-epilepsy/