The subjective handicap of epilepsy A new approach to measuring treatment outcome

It is now widely acknowledged that the impact of epilepsy on the individual extends beyond the occurrence of seizures, and that there is a need for outcome measures sensitive to these consequences. Until now these instruments have largely been developed within a ‘quality of life ’ framework. The technical and conceptual difficulties that arise with measuring quality of life have led us to develop a more focused measurement model, the ‘Subjective Handicap of Epilepsy’ (SHE) scale, based on the World Health Organization’s concept of handicap. The scale contains 32 items in six subscales: ‘Work and activities ’ (eight items), ‘Social and personal ’ (four items), ‘Self-perception ’ (five items), ‘Physical ’ (four items), ‘Life-satisfaction ’ (four items) and a ‘Change ’ scale (seven items); and it takes on average,10 min to complete. The scale’s test–retest reliability was found to be satisfactory (intra-class correlation coefficient was 0.8–0.9 in 110 subjects). The test–retest interval (24 h to 8 weeks) had no influence on the reliability. The reliabilit