A quantitative approach to measuring the social effects of epilepsy

This paper describes the construction of a postal questionnaire which has been used to investigate the social affects of epilepsy on a wide range of patients. The social profile was designed following extensive patient interviews at the National Hospital for Nervous Diseases and the Chalfont Centre for Epilepsy. The initial research revealed 21 areas of concern for the individual with epilepsy, which are described. Reliability was assessed on a test/retest procedure. Validity was tested via a criterion-related study based on the behaviour of the subject. Following reliability and validity studies 14 areas were eventually selected for the final questionnaire. Instruments have been adapted for both children and adults.