Brain, Vol 121, Issue 2 317-343, Copyright © 1998 by Oxford University Press
MF O'Donoghue, JS Duncan and JW Sander
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
reliability was also not affected by minor recent fluctuations in seizure
frequency. The internal consistency of the scales was 0.8-0.9 (Cronbach's
alpha). The construct validity of the scale was examined in a sample of 287
clinic attendees at a university neurology clinic in the UK. The scales
were highly sensitive to the handicapping effects of increasing seizure
frequency, employment status, the impact of epilepsy on career choice and
the subject's own opinion as to the major determinant of their quality of
life. The scales were also sensitive, retrospectively, to the benefits of
successful epilepsy surgery in a cohort of 105 patients. Scales focusing
specifically on handicap were more sensitive to group differences in
seizure frequency in the clinic population, and to outcome after epilepsy
surgery, than the 'Life-satisfaction' scale and the Epilepsy Surgery
Inventory 55 (ESI-55) scales. This supports the contention that measuring
'subjective handicap' may be a more sensitive, and more useful, approach to
assessing the impact of interventions on the long-term consequences of
epilepsy than current methods.
ARTICLES
The subjective handicap of epilepsy. A new approach to measuring treatment outcome
Epilepsy Research Group, Institute of Neurology, London, UK.
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