Quality of Life in Epilepsy: Same questions, but different meaning to different people

Abstract Objectives Patient‐reported outcome measures (PROMs) are used widely to elicit patient's self‐appraisal of their health status and quality of life. One fundamental assumption when measuring PROMs is that all individuals interpret questions about their health status in a consistent manner. However, subgroups of patients with a similar health condition may respond differently to PROM questions (ie, differential item functioning [DIF]), leading to biased estimates of group differences on PROM scores. Understanding these differences can help inform the clinical interpretation of PROMs. This study examined whether DIF affects 10‐item Quality of Life in Epilepsy (QOLIE10) scores reported by patients with epilepsy in outpatient clinics. Methods Data were from the Calgary Comprehensive Epilepsy Program, a prospective registry of patients with epilepsy in Calgary, Alberta. Latent variable mixture models (LVMMs) based on standard two‐parameter graded response models with increasing numbers of latent classes were applied to QOLIE10 item data. Model fit was assessed using the Bayesian Information Criterion (BIC) and latent class model entropy. Ordinal logistic regression was used to identify QOLIE10 items that exhibited DIF. Results In this cohort of 1143 patients, 567 (49.6%) were female and the median age was 37.0 (interquartile range [IQR] 27.0) years. A two‐class LVMM, which provided the best fit to the data, identified two subgroups of patients with different response patterns to QOLIE10 items, with class proportions of 0.62 and 0.38. The two subgroups differed with respect to antiseizure polytherapy, reported medication side effects, frequency of seizures, and psychiatric comorbidities. QOLIE10 items on the physical and psychological side effects of medication exhibited large DIF effects. Significance Our study revealed two different response patterns to quality‐of‐life instruments, suggesting heterogeneity in how patients interpret some of the questions. Researchers and users of PROMs in epilepsy need to consider the differential interpretation of items for various instruments to ensure valid understanding and comparisons of PROM scores.