In the region, a constantly evolving network to guarantee quality care and assistance uniformly throughout the territory
February 12, 2024 – Prevention, diagnosis, management and support. They are the foundations of the Epilepsy Pathway from the Emilia Romagna regionwhich coordinates across the entire territory, from Piacenza to Rimini, one integrated intervention network aimed at assisting people with epilepsy.
On the occasion of International Epilepsy Day which is celebrated around the world on February 12th and sees the regional health service and patient associations engaged in awareness-raising initiatives, the Region reiterates its commitment to continue to guarantee and further improve care and support for patients and their families, while promoting awareness on this pathology, which in world – according to World Health Organization estimates for 2019 – affects approximately 50 million people of all ages.
“Emilia-Romagna was among the first regions in Italy to equip itself with a homogeneously integrated network across the entire territory for assistance services to people with epilepsy – recalls the councilor for health policies, Raffaele Donini-. A constantly evolving network, which is responsible for guaranteeing patients effective care and social-healthcare assistance, supporting them towards the achievement of personal and professional goals and, no less importantly, counteracting with correct information the phenomena of discrimination which, unfortunately , sometimes people with this pathology have to face. The international day of 12 February – concludes Donini – helps us to keep the attention on epilepsy high and to continue working on prevention, management and support for patients, families and caregivers”.
The Epilepsy Path assistance network in Emilia-Romagna
The Emilia-Romagna Region dal 2010 he decided to equip himself with a Epilepsy Path for the integrated and homogeneous management of the assistance services already guaranteed to people with epilepsy.
The address lines they ensure prevention interventions, the diagnostic-therapeutic path with the taking charge of the person and the continuity of social-health care, both between local structures and hospitals, and in the preparation of the individual program, in particular for inclusion in school or in the world of work and for rehabilitation activities. The healthcare companies also develop training initiatives aimed at operators and families and aimed at multiple objectives: individual support of patients from an emotional relational point of view, daily management of the pathology and administrative aspects such as recognition of disability, copay exemption and car licence.
In 2017 the Region has set up a coordination, monitoring and scientific consultancy group on the Epilepsy Path, called Epilepsy Working Groupwith the aim of promoting research, updating regional guidelines, redefining the regional epilepsy surgery network and promoting citizen awareness initiatives.
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Epilepsy, description and epidemiology
It is a neurological condition characterized by recurrent and sudden manifestations with loss of consciousness and violent convulsive movements of the muscles, called “epileptic seizures”. These events can have a very short duration, so much so that they go almost unnoticed, or even continue for long periods. Epilepsy can give rise to variable clinical manifestations and the causes are multiple, including those of a genetic nature. Adequate therapy can control seizures in most cases and ensure a good quality of life. Apart from limited cases of recovery, a third of patients are resistant to pharmacological therapy and in some of these cases it is possible to resolve the pathology even with targeted surgical therapy. According to the 2019 World Health Organization report, epilepsy is one of the most frequent neurological diseases and affects approximately 50 million people of all ages worldwide. On the basis of epidemiological estimates, it is estimated that, in 2018, there were approximately 35,000 people with epilepsy in Emilia-Romagna, 17% of whom (5,721) were of developmental age, i.e. between 0 and 17 years. In Italy there are over 400 thousand people affected by epilepsy.
The results of the Epilepsy Working Group
In 2020 the Region approved the Regional Epilepsy Path Observatory project (ORPE), promoted with the contribution of the Italian Association against Epilepsy (AICE ODV), and established the Working Group for the implementation and monitoring of the Path, which is responsible for collecting data relating to the health and social path of epileptic people in Emilia-Romagna, carry out information activities aimed at patients, families and operators and monitor the implementation of the Path.
ORPE, furthermore, it identifies the number of people alive, residing in the region and treated for epilepsy in the last 12 years by the regional health service. The ORPE working group, through the use of the databases of the regional health service (hospitalizations, exemptions, emergency room, specialist outpatient clinics, drug dispensing and others), has identified an algorithm that retrospectively estimates how many people with epilepsy are assisted in Emilia -Romagna.
However, since these are administrative data and not validated from a clinical point of view, the ORPE working group managed to have the approval approved in 2021.Regional Law 8 establishing the first Regional Epilepsy Registry (RREP) in Italy, which is a prospective registry based on the clinical validation of the diagnosis of epilepsy and therefore a reliable and certain source of information on the Epilepsy Pathway.
In 2022 the new ones have been approved Guidelines for healthcare companies for the organization of integrated care for people with epilepsy, with the collaboration of the Epilepsy Association ODV and the Italian League against Epilepsy (LICE-Emilia-Romagna section), who participated in the drafting of the relevant documents to the Epilepsy Pathway over the various years.
The document specifies the care phases of Diagnostic Therapeutic Assistance Path (PDTA), namely: access, diagnosis, medical treatment and follow-up, pre-surgical evaluation and surgical treatment, neurostimulation treatment and, finally, emergency management.
Between new features introducedthe creation of the birth path for women with epilepsy aimed, through collaboration between obstetricians, neurologists and neonatologists, at providing adequate information before conception, optimizing antiepileptic therapy, organizing prenatal checks in an appropriate environment, giving an adequate clinical evaluation on the methods of childbirth and accompanying women even after birth.
Fight against drug-resistant epilepsy and regional hub for surgical treatment
Another central theme in the Epilepsy Path is the fight against drug-resistant epilepsies and full implementation across the region epilepsy surgery program. From literature data, despite progress in the development of new drugs, 25-30% of people suffering from epilepsy do not respond optimally to drug therapy with the persistence of seizures. It is therefore important to offer them an alternative to pharmacological treatment.
Among the possibilities, the surgical treatment of epilepsy which, according to 2023 data from the Italian League against Epilepsy, could benefit approximately 25-30% of patients with focal or drug-resistant epilepsy. In 2018 the Region created a Integrated regional hub for the surgical treatment of the disease, which operates in two locations: the Irccs of Neurological Sciences of Bologna, at the Bellaria hospital, and the integrated Neurosciences department of the Modena University Hospital, at the Baggiovara hospital. The doctors at the Hub, supported by the local Spoke network, are responsible for selecting patients who can face this type of operation and evaluating any alternative treatments to surgery for those who cannot support it