Epilepsy--giving the diagnosis. A survey of British paediatric neurologists

Adult-centred studies continue to show poor information provision and understanding in people with epilepsy. This study explores whether paediatric neurologists work within a consultation framework designed to meet information needs. A questionnaire on how to give the diagnosis was sent to 32 UK Paediatric Neurologists. Consultation content was largely determined intuitively rather than on a shared knowledge of the process involved. Little consensus was identified in relation to analogy and the usefulness or awareness of available unevaluated literature; but most acknowledged the value of a specialist epilepsy nurse. Most responses were based on a typical medical agenda but less than 20% addressed emotional responses and adaptation. Three approaches were identified-'pro-active' (running the risk of overload but recognising the right of parents to information), 'reactive' (more individually tailored, but assumes doctors can judge parental reactions) and 'drip-feed' (protective and pre-selecting topics to meet the situation). Our aim to establish a guideline proved impossible. Further study should develop more detailed models of the disclosure process, and identify epilepsy explanations that can be consumer-tested.