Epilepsy is one of the most common neurological conditions worldwide. Nearly 400,000 people in Spain have their lives affected by this chronic disease that is characterized by a continued predisposition to the appearance of epileptic seizures, and which is accompanied by neurobiological, cognitive, psychological and social consequences.
In recent years, new drugs with novel mechanisms of action have been developed that have managed to reduce the number and intensity of seizures, providing improvements in the quality of life of many patients with epilepsy. However, four out of ten people with epilepsy cannot control their seizures despite previous treatments.
These patients have a worse quality of life, with more associated comorbidities, a greater risk of falls, trauma and injuries, and psychosocial alterations. All of this implies a higher risk of premature death and an associated mortality rate 2-3 times higher than that of the general population. Epilepsy not only represents challenges in the health field, but also has profound socioeconomic and psychological consequences for those who suffer from it and their families. According to Dr. Mar Carreño, president of the Spanish Epilepsy Society (SEEP) and director of the Epilepsy Unit of the Hospital Clínic of Barcelona and the Clavel Institute, “the economic burden includes direct and indirect health costs, such as those related to the loss of labor productivity.”
Patients may “have difficulty finding and maintaining employment,” largely due to “driving limitations or restrictions on certain activities that pose a danger to the patient or others in the event of a crisis.” This can have “a great emotional and psychological impact on the person with epilepsy and produce anxiety and depression, which aggravate the burden of the disease.”
Although the goal of epilepsy treatment is to achieve seizure freedom, the probability of achieving this decreases with each drug that does not work. It is necessary for patients to obtain a quick and accurate diagnosis of the disease. However, the diagnosis can be delayed in time, even years. Dr. Mar Carreño indicates that the current approach to this disease in Spain, which covers both diagnosis and treatment, “may have greater or lesser complexity depending on the type of patient.” Furthermore, she emphasizes “the importance of pharmacological treatments and, in cases of uncontrolled epilepsy, the need to resort to epilepsy surgery and neurostimulation therapies.” According to her, she clarifies, “currently the system faces challenges such as late diagnosis and variability in access to appropriate treatments.”
In response to this reality and with the aim of promoting a change in the approach to epilepsy in Spain, Angelini Pharma, with the collaboration of the Spanish Epilepsy Federation (FEDE), has presented the Decalogue for the improvement of patient care with epilepsy.
This initiative proposes ten measures to provide effective responses to the multiple challenges that epilepsy poses both for patients and for the National Health System (SNS) itself. “Through these ten specific proposals, we seek to improve the quality of life and optimize care for patients with epilepsy.” The text raises proposals “in the identified areas of improvement, such as the coordination and organization of medical care, training and specialization in epilepsy, as well as raising awareness and making the disease visible in society,” the doctor advances. One of the main conclusions of the decalogue is the need to promote a National Epilepsy Plan, in whose preparation all the actors involved participate, including the patients themselves, which marks a clear and consensual route for the patient’s passage through the health system, ensuring the coordination of the different levels of care for patients with epilepsy and establishing the ideal moments for the patient to be referred to more specialized centers according to their clinical profile. This plan “would help standardize care and improve outcomes for patients with epilepsy throughout the country,” emphasizes Dr. Carreño.
The first proposal of the decalogue is based on the design and implementation of an integrated care process for epilepsy. According to Carreño, “this plan must contemplate all stages of care for patients with epilepsy, from diagnosis to treatment and follow-up, ensuring a coordinated and efficient approach.”
Another of the pillars addressed in the decalogue is to strengthen the centers, services and reference units (CSUR) in epilepsy. Currently, there are patients who continue to experience seizures despite having been treated with at least two appropriately chosen and well-tolerated anti-seizure drugs. According to the doctor, “these patients should be referred to one of these centers to assess whether they are candidates for therapies such as epilepsy surgery or neurostimulation.” In this sense, “it is necessary to provide the CSUR with additional resources, both human and technological, to improve their capacity to offer specialized care and innovative treatments.”
None of these proposals would make sense if the development of specific protocols according to the patient’s profile is overlooked. Or if communication channels between professionals are not established, since “it is necessary to promote collaboration and the exchange of information between the different health professionals involved in the care of patients with epilepsy at different levels of care.”
The decalogue of Angelini Pharma and FEDE also mentions the need to improve the training and specialization in epilepsy of health professionals. It also underlines the importance of increasing visibility and awareness about epilepsy in society. According to Dr. Carreño, “information and educational campaigns reduce the stigma associated with epilepsy and improve understanding and social support for people living with this condition.”
