Dr Anthanasios Covanis, President of the International Bureau for Epilepsy (IBE) details the psychosocial impact of epilepsy, and its challenges in day to day life
Epilepsy is one of the most common serious brain disorders that affects at least 65 million people worldwide in a variety of ways, and is expressed clinically by seizures of various severity and frequency. Almost 30% of people with epilepsy do not respond to the existing antiepileptic drugs and in low-and middle-income countries up to 80% do not receive any treatment at all. In any society, people with epilepsy who have seizures have an increased risk of injury, are stigmatised and discriminated from a range of areas including social activities, education, employment and insurance. In many countries, legislation issues, such as those applying to the right to have a license to drive where seizures are controlled, are not applied and frequently violated.
In contrast to many chronic illnesses, where the impact is experienced through its physical symptoms and its effect on psychosocial consequences, in epilepsy, the physical manifestations are mostly transient and the psychosocial consequences grow with time and severely affect the function of people with epilepsy.
Various factors can adversely affect the lives of people with epilepsy, such as the direct and indirect effect of unpredictable seizures, the impact of treatment and the neuropsychological aspects of epilepsy (cognitive difficulties, memory complaints, depression, and psychosis), and the impact the social stigma and prejudice directed against the individual with epilepsy. Additional contributors affecting the quality of life result from uncontrolled seizures, restrictions on driving, and human rights violation.
Health-Related quality of life (HRQOL) is often referred to as the impact of disease and treatment on Quality of Life (QOL) or it may be described as the patient’s perception of disease impact on well-being and is used as a subjective measure in population studies. The psychosocial impact of epilepsy and seizures is related to QOL, psychosocial state, educational achievement, employment and marital status. Various risk factors related to unpredictable seizures have been identified to predispose to poor QOL such as stress in the individual and the family, restrictions of liberty, driving, problems in making friends, getting or retaining a job, poor access to education, the perception of epilepsy by the individual, sexual problems which differ between males and females who have epilepsy and, finally, the isolation and depression encountered by people with epilepsy. Epilepsy is more than seizures and all these factors make epilepsy significant health and socio-economic burden.
In the past, the sole measure of successful treatment of epilepsy was the degree of seizure control. During the last few decades, various innovative tests have been developed in assessing the impact of physical function, health, social function and psychological state. While the concept of QOL is ambiguous, quality of life measures is used to value treatments of various conditions including epilepsy. However, modified measures that identify predictors that correlate to health-related quality of life, may better help to improve the quality of life of people with epilepsy by preventing them. Optimising QOL requires more than controlling seizures and multiple biological and social processes must be considered.
The International Bureau for Epilepsy, together with our medical counterpart organisation – the International League Against Epilepsy – are involved in a number of initiatives to improve the social and medical quality of life of people with epilepsy and to raise awareness and understanding of the disease. These include the EU Resolution on Epilepsy, passed by the parliament in 2011 by one of the largest ever majorities of MEP signatures for a resolution. Since 2011 we have also celebrated an annual European Epilepsy Day that, just this year, has been developed to become an annual International Epilepsy Day. A longer-standing initiative has been our 3-way partnership with the WHO in the Global Campaign Against Epilepsy ‘Out of the Shadows’. In January of this year, the WHO passed a Resolution on Epilepsy during its Executive Board Meeting and in late May this is due to have final ratification during the World Health Assembly at the United Nations in Geneva.
The International Bureau for Epilepsy and all stakeholders working in the field of epilepsy must join forces to develop supporting measures of acceptance, self-reliance, self-respect, and the self-empowerment of people with epilepsy to obtain a place in the community equal to their abilities. We also need the continued support of national organisations, public health agencies, and special action groups to make epilepsy a top healthcare priority particularly in those low-and middle-income countries where a reduction in the 80% treatment gap is vital.
Dr Athanasios Covanis
President
International Bureau for Epilepsy (IBE)
Tel: +353 121 08850
