The experience of discontinuing antiepileptic drug treatment: an exploratory investigation

Between 60% and 70% of people with epilepsy become seizure free and may choose to withdraw from antiepileptic medication. Numerous studies discuss possible factors which may influence seizure recurrence following discontinuation. However, few studies attempt to explore the decision-making process from the perspective of the patient. It is believed this is the first study to explore patients' experience of discontinuing medication following a seizure-free period of 2 years.

Semi-structured interviews were conducted with twelve people with epilepsy who had attempted withdrawal from their medication. All twelve of the participants lived in the North-East of England. A phenomenological approach was taken in order to gain an in depth understanding of their withdrawal decisions.

Five themes emerged from the interviews. Principally, the timing of when to withdraw was a key concern, as well as the uncertainty of seizure recurrence, issues with medication and the embarrassment of being diagnosed with epilepsy. Those who unsuccessfully withdrew from medication discussed their acceptance of the condition. Mixed feelings regarding satisfaction with G.P. support were also reported.

Incorporating the themes into the Theory of Planned Behaviour [Ajzen I. In: Marks DF, editor. The health psychology reader. London: Sage; 1985] provides a model of the withdrawal decision-making process based on the experiences of those who have made the decision. There is a paucity of research investigating the withdrawal decision, therefore the findings from this study should be used for the production of appropriate and relevant information regarding the key issues which have been raised regarding withdrawal decisions and support those making the decision.