Epilepsy--improvement of giving the diagnosis between the demands for standardisation versus individualisation

Abstract

Starting from Cunningham et al.'s [Seizure 11 (2002) 500] attempt to develop a guideline for giving the diagnosis of childhood epilepsy, the paper discusses the specific difficulties emerging on the way towards a standardisation and development of guidelines for the disclosure of diagnosis. The major objective of disclosure is to enhance positive adaptation towards epilepsy and its associated stressors and treatment demands. Adaptation to a chronic disease, however, depends on subjective processes of stress appraisal and coping response. Supporting adaptation by favourable strategies of disclosure therefore requires to explore and respond to the very personal perception of the medical and psychosocial consequences of the disorder. The broad interindividual variation of subjective anxieties therefore entails the necessity to individualise the procedure of telling the diagnosis in order to maximise its goodness of fit to patient and family characteristics. A procedure is suggested that integrates the individualisation of information provision and counselling, on the one side, and the efforts of standardisation and guideline development, on the other side, in order to improve resulting disclosure practice.