What do people with epilepsy know about their condition? Evaluation of a subspecialty clinic population

Knowledge and understanding of chronic disease has an important role to play in establishing good quality outcomes. A small number of studies have looked at a number of different aspects of patient knowledge and self-management strategies. This study used three previously published scales to assess for the first time both the patients’ personal knowledge of their own condition and their fund of knowledge about epilepsy in general, its treatment and consequences. The subjects were all patients attending a specialist-led epilepsy service in a tertiary care teaching hospital in Dublin, Ireland. Fifty-two subjects successfully completed three knowledge-based surveys focusing on personal information and compliance, safety, driving and employment legalities. Patients were more knowledgeable about the particulars of their individual condition rather than about epilepsy in general. Anti-epileptic drug compliance scores were highest overall; safety and legal issues ranked lowest. Many patients with epilepsy are not well informed about their disorder. Thus, there is a need for educational intervention in this population in order to optimize self-management strategies.