Development and cross-cultural translations of a 31-item quality of life in epilepsy inventory.
OBJECTIVE
We report the development of a questionnaire to assess health-related quality-of-life (HRQOL) in people with epilepsy and the process of cross-cultural translations of the questionnaire.


METHODS
A sample of 304 adults with epilepsy from 25 seizure clinics in the United States was used to derive an abbreviated questionnaire focusing on epilepsy-related issues from a longer, 89-item instrument (QOLIE-89). A rigorous forward-backward-forward system was used for cross-cultural translation.


RESULTS
A 31-item questionnaire (QOLIE-31, version 1.0) resulted, comprising seven subscales covering general and epilepsy-specific domains. Subscale and total scores can be calculated. The subscales were grouped into two factors: Emotional/Psychological Effects (seizure worry, overall QOL, emotional well-being, energy/fatigue subscales) and Medical/Social Effects (medication effects, work-driving-social limits, cognitive function subscales). Cross-cultural translations were made from U.S.-English into Danish, Dutch, German, Canadian French, French, Italian, Spanish, Swedish, and U.K. English Versions 1.1.


CONCLUSIONS
Our results support the reliability and validity of the QOLIE-31 (U.S.-English version 1.0) as a measure of HRQOLIE. Cross-cultural translations into nine other languages make it feasible to use the QOLIE-31 (version 1.1) in multinational clinical trials after validation in each population or concurrent with the clinical trial.
Cramer
J A
JA
Health Services Research, VA Connecticut Healthcare System, West Haven 06516, USA.
Perrine
K
K
Devinsky
O
O
Bryant-Comstock
L
L
Meador
K
K
Hermann
B
B
D000293:Adolescent; D000328:Adult; D002170:Canada; D003431:Cross-Cultural Comparison; D004827:Epilepsy / Q000175:diagnosis* / Q000523:psychology; D005060:Europe; D005260:Female; D006305:Health Status Indicators; D006801:Humans; D008297:Male; D008875:Middle Aged; D011594:Psychometrics / Q000592:standards; D011788:Quality of Life; D015203:Reproducibility of Results; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires / Q000592:standards; D014177:Translations; D014481:United States