Development of the Quality of Life in Epilepsy Inventory

Abstract

We developed an instrument to measure health-related quality of life (HRQOL) in epilepsy. A 99-item inventory was constructed from the RAND 36-Item Health Survey (generic core), with 9 additional generic items, 48 epilepsy-targeted items, and 6 other items concerning attitudes toward epilepsy and self-esteem. We administered the 99-item inventory to 304 adults with epilepsy at 25 epilepsy centers. Patients and patient-designated proxies completed the inventory and were retested 1-91 days later. A multitrait scaling analysis of these data led to retention of 86 items distributed in 17 multiitem scales (Cronbach's alpha ranged from 0.78 to 0.92). Factor analysis of the 17 multiitem scales yielded four underlying dimensions of health: an epilepsy-targeted dimension, a cognitive factor, mental health, and physical health. Construct validity was supported by significant patient-proxy correlations for all scales and correlations between neuropsychologic tests and self-reported emotional and cognitive function (all p values < 0.05). There were significant negative correlations between the four factor scores derived from the HRQOL scales and neurotoxicity, systemic toxicity, and health care utilization (except for the correlation between mental health factor and health care utilization; all p values < 0.05). Patients who were seizure-free in the preceding year reported better HRQOL for the overall score, three of the four factor scores, and 8 of the 17 scale scores than did patients with a high frequency of seizures. Relative validity analysis showed that the epilepsy-targeted factor and three of its four component scales were more sensitive to categorization of patients by severity of seizure frequency and type than scales tapping physical health, mental health, or cognitive function. These cross-sectional data support the reliability and validity of this measure of HRQOL in epilepsy. The addition of an epilepsy-targeted supplement to the generic core improved the sensitivity to severity of epilepsy. The 86 items included in the field testing were supplemented by three additional items to form the Quality of Life in Epilepsy (QOLIE-89) inventory.

Quality of Life in Psychogenic Nonepileptic Seizures

“…We measured HRQOL with QOLIE-89, which is the most widely used and most comprehensive instrument specifically developed for evaluation of HRQOL in patients with epilepsy (2). Because ESs and PNESs may be clinically very similar, QOLIE-89 also appears to be an excellent tool for evaluation of patients with PNESs (32).…”

Onset of polyspike complexes in a mean-field model of human electroencephalography and its application to absence epilepsy

“…Epilepsy carries significant mortality (Cockerell et al 1994) and morbidity (Buck et al 1997) as well as reduced quality of life (Devinsky et al 1995). A recent National Sentinel Audit revealed an annual mortality in the UK of more than 2000 cases per year.…”

The relevance of health related quality of life in paced patients

“…For example, physical and mental health composite scores for the SF-36 are available [31]. Disease specific supplements for the SF-36 have been developed for angina pectoris [22], liver disease [32], kidney disease [33], epilepsy [34], multiple sclerosis [35], smoking cessation [36], prostate cancer [37], and duodenal ulcer patients [38].…”