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Patient‐Validated Content of Epilepsy‐Specific Quality‐of‐Life Measurement
Author(s) -
Gilliam Frank,
Kuzniecky Ruben,
Faught Edward,
Black Lorie,
Carpenter Gordon,
Schrodt Rita
Publication year - 1997
Publication title -
epilepsia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.687
H-Index - 191
eISSN - 1528-1167
pISSN - 0013-9580
DOI - 10.1111/j.1528-1157.1997.tb01102.x
Subject(s) - embarrassment , epilepsy , quality of life (healthcare) , mood , medicine , perspective (graphical) , psychology , psychiatry , clinical psychology , nursing , social psychology , artificial intelligence , computer science
Summary:Purpose : To study the effects of epilepsy from the patients’perspective and assist determination of content validity of health‐related quality‐of‐life (HRQOL) measures. Methods : We asked 81 consecutive patients with moderately severe epilepsy to list in order of importance their concerns of living with recurrent seizures. To minimize investigator bias, patients completed the procedure in a private setting without staff involvement. Results : Twenty‐four distinct domains were generated by the patients. Concerns about driving (64%), independence (54%), employment (51%), social embarrassment (36%), medication dependence (33%), mood/stress (32%), and safety (31%) each were listed by >30% of patients. Driving was listed as the most important concern by 28% of patients, followed by employment (21%), independence (9%), safety (6%), antiepileptic‐drug side effects (5%), seizure unpredictability (5%), and seizure aversion (5%). Conclusions : The effect of epilepsy on HRQOL is not vague or obscure from the patients’perspective but is defined by a limited number of domains. Independence is an important concern that may not be evaluated adequately by currently available HRQOL instruments.