Advances in methods for assessing the impact of epilepsy and antiepileptic drug therapy on patients' health-related quality of life
Department of Quantitative Health Sciences
Adolescent; Adult; Aged; Anticonvulsants; *Epilepsy; Female; Humans; Male; Middle Aged; Psychiatric Status Rating Scales; Psychometrics; *Quality of Life; Reproducibility of Results; *Sickness Impact Profile; Treatment Outcome
Biostatistics | Epidemiology | Health Services Research
We studied 31 previously validated and newly developed generic and epilepsy-specific scales to evaluate their usefulness for assessing the impact of epilepsy and anti-epileptic drug (AED) therapy on health-related quality of life (HRQOL). Included were the MOS SF-36 Health Survey, additional measures of mental health, cognition, epilepsy-specific perception of control, behavioural problems, distress, worries and experiences, the Liverpool Epilepsy Impact and Seizure Severity scales, and a patient-completed symptom checklist. Questionnaires were completed twice by 136 patients on AED therapy in a multicentre study in the UK. Validity was assessed in relation to disease severity, defined as time since last seizure, and to patient-reported symptoms. Statistical analyses to estimate the contribution of HRQOL information of each scale relative to that of others were conducted. The 171-item questionnaire could be completed by out-patients with epilepsy with good data quality. With few exceptions, generic and epilepsy-specific measures satisfied psychometric tests of hypothesized item groupings and scale score reliability (internal consistency and test-retest reliability) and differentiated well between groups of patients differing in time since last seizure and in symptom impact, regardless of time since last seizure. However, scales differed widely in their validity in discriminating between groups of patients known to differ clinically. The SF-36 Role Physical scale best discriminated among groups differing in disease severity. The epilepsy-specific Mastery, Impact, Experience, Worry, Distress, and Agitation scales were among the 10 best measures in discriminating among groups differing in disease severity. Generic measures, especially measures of social and role functioning and mental health, were best at differentiating groups of patients differing in symptom impact. Recommendations are offered for concepts and specific scales most likely to be useful in future studies of the HRQOL burden of epilepsy and the HRQOL benefits of AED therapy.
DOI of Published Version
Qual Life Res. 1995 Apr;4(2):115-34. Link to article on publisher's site
Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
Wagner, A. K.; Keller, S. D.; Kosinski, M.; Baker, G. A.; Jacoby, A.; Hsu, M. A.; Chadwick, D. W.; and Ware, John E. Jr., "Advances in methods for assessing the impact of epilepsy and antiepileptic drug therapy on patients' health-related quality of life" (1995). Quantitative Health Sciences Publications and Presentations. 524.