A procedure for developing a quality-of-life measure for epilepsy surgery patients

In 1990, the NIH Consensus Conference Panel on epilepsy surgery called for the development and use of reliable and valid health-related quality-of-life (HRQOL) measures in epilepsy surgery studies. A HRQOL measure for epilepsy surgery patients has been developed and evaluated. The procedure, which could also be used to develop HRQOL measures for other neurological diseases, entails the following steps: (a) specify desired characteristics of the measure; (b) identify relevant HRQOL areas by reviewing the literature; (c) assemble generic core items and disease-specific supplementary items; (d) pilot test and revise the measure; (e) administer revised measure items to a large sample of epilepsy surgery patients; (f) perform item analysis to evaluate hypothesized item placement within scales; and (g) assess the reliability and validity of the scales. The product of this process, the Epilepsy Surgery Inventory (ESI)-55, is a self-report measure of 11 dimensions of HRQOL. It is brief, comprehensive, and reliable; preliminary evidence supports its validity.