Improving the quality of life of patients with refractory epilepsy will be the central topic that will bring together specialists in Neurology at the X Congress of the Spanish Epilepsy Society (SEEP), which will be held in Madrid from October 3 to 5. In this framework, the symposium “The holistic management of the patient with epilepsy refractory”, organized by Jazz Pharmaceuticalswhich will address the need to go beyond crisis control to offer a comprehensive treatment that helps patients improve their well-being. A matter that has a high demand, since, according to reports from the WHOepilepsy is the second neurological disease with the most years of life with disability cause.
Dr. Manuel Toledofrom the Neurology Service of the Vall d’Hebron University Hospital, Barcelona, will be one of the specialists present at this forum. We spoke with him before the start of the 10th SEEP Congress.
Could you explain to us what the “holistic management” of refractory epilepsy consists of and what benefits it provides compared to traditional approaches?Refractory epilepsy implies the impossibility of absolute seizure control with medications. In a holistic or more modern concept of epilepsy treatment, it is necessary to ensure other aspects of the disease that improve the quality of life of the patient and their caregivers.
We know that epileptic seizures affect the motor, sensory and psychological life of patients. What complications associated with seizures most impact patients’ quality of life?The decrease in any of our mental faculties decreases the quality of life. Particularly in epilepsy, psychiatric involvement, which includes depression or behavioral alteration, can affect the patient’s quality of life more than the epileptic seizures themselves. Another relevant aspect is the cognitive state, which if we manage to improve it we allow the patient to have a more autonomous life.
The WHO mentions that epilepsy is the second neurological disease that causes the most years of life with disability. What strategies are being used to minimize this impact on patients?Present and future strategies to reduce the years of life with disability from a medical point of view focus on early diagnosis of the cause of epilepsy and optimization of treatment. From a social point of view, it focuses on providing support to the patient and their environment so that they can join an academic and work environment that allows them to maximize their possibilities.
Up to 50% of patients perceive epilepsy as a stigma. How does this perception affect their social integration and what role do doctors play in reducing this stigmatization?Probably, although 50% of patients declare themselves stigmatized, more will be affected. Epilepsy has been associated with false beliefs of demonic possession and other cultural hoaxes by which the patient is discriminated against, for example, the patient and their family members are not invited to birthday parties. The doctor’s work consists primarily of disproving myths and legends, in addition to providing all the necessary information so that the reality of the disease can be disseminated.
What recent advances in the treatment of drug-resistant epilepsy are making a difference in patients’ quality of life?The progress, as we will address in the Jazz Symposium of the SEEP Congress, is palpable in that in the last 20 years more treatment alternatives have been developed than in the previous two centuries derived from the knowledge and development of medical and technological advances. However, social action led by affected families and the involvement of decision-makers have been a fundamental part of the improvements.
How is the evolution of patients with refractory epilepsy evaluated in a holistic approach, beyond the simple reduction of epileptic seizures?Currently, doctors no longer only evaluate the effectiveness and safety of the treatment we apply over a short period of time. Continuous monitoring, assessment and advice on aspects related to lifestyle is a fundamental objective in our daily medical work.
How are families included in the holistic management of patients, and how can their involvement improve treatment outcomes?The patient with epilepsy with good family support will always have a better prognosis. There are aspects of epilepsy such as memory loss, lack of concentration, sleep and behavioral disturbances, in which the collaboration of their families is crucial. Taking medication correctly, respecting sleep schedules, or lifting your mood on gray days is a task that is made easier with a close family member.
What are the main challenges facing the medical community to further improve the quality of life of patients with refractory epilepsy?For a truly holistic treatment, in addition to obtaining treatments that improve psychological or cognitive aspects, the link between the health, social and academic-work areas is the basis for ensuring that patients with epilepsy and their environment achieve a fuller life.
