The patients’ perspective on epilepsy: Challenges, sexual problems, provision of information and adherence to treatment

Abstract

Epilepsy is a common neurological disease characterized by unpredictable recurrent epileptic seizures. The aim of this thesis was to evaluate the patients’ perspective on various epilepsy-related challenges in everyday life. Our surveys demonstrated that even patients with well-controlled epilepsy reported a high degree of various epilepsy-related problems of physical, cognitive, and psychosocial nature. We found that sexual difficulties are more common among those with epilepsy compared to the general population. More and better information from the health care system was requested, particularly about the disease, its treatment, and possible consequences of recurrent seizures. Nearly all patients wanted information about the risk of sudden unexpected epilepsy-related death, but only about one third had received such information. About one third of the patients admitted to have failed to have taken the drugs as prescribed, either intentionally or unintentionally. This thesis has uncovered the major obstacles patients with epilepsy are facing. This knowledge is of great importance to further improve modern, comprehensive, patient-centered care in epilepsy.