Cited by 634Epilepsy research and treatmentHealth Systems, Economic Evaluations, Quality of LifeHealth Education and Validation

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Development of the Quality of Life in Epilepsy Inventory

Devinsky, Orrin, Vickrey, Barbara G., Cramer, Joyce, Perrine, Kenneth, Hermann, Bruce, Meador, Kimford, Hays, Ron D.·1995·Epilepsia

DOI 10.1111/j.1528-1157.1995.tb00467.x

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Abstract

Summary: 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.

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BackgroundSelf-citation
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Influential
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Background
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Paradigm Shifts in the Neuropsychology of Epilepsy
Hermann, B. P., Loring, D. W., & Wilson, S. J. (2017) · Journal of the International Neuropsychological Society · doi:10.1017/s1355617717000650 · Cited by 69
“This approach was expanded in the Quality of Life in Epilepsy Inventory-89 items (QOLIE-89) (Devinsky et al., 1995), with subsequent short-forms of 31, and 10 items (Cramer et al.”
MethodSelf-citation
Seizures in the elderly: Impact on mental status, mood, and sleep
Haut, S. R., Katz, M. J., Masur, J. H., & Lipton, R. B. (2009) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2009.01.005 · Cited by 68
“Although disease-specific psychiatric screening tools are available for epilepsy [25], they are designed for use in persons with epilepsy and not suitable for comparing cases with epilepsy and controls.”
Background
Accuracy of self-reported neuropsychological functioning in individuals with epileptic or psychogenic nonepileptic seizures
Fargo, J. D., Schefft, B. K., Szaflarski, J. P., Dulay, M. F., Testa, S. M., Privitera, M., & Yeh, H. (2004) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2003.11.023 · Cited by 68
“Focal onset epilepsy patients selected on this basis included the entire spectrum of epilepsy severity [37].”
Background
Antiepileptic drug effects on subjective and objective cognition
Quon, R. J., Mazanec, M. T., Schmidt, S. S., Andrew, A. S., Roth, R. M., MacKenzie, T. A., Sajatovic, M., Spruill, T. M., & Jobst, B. C. (2020) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2020.106906 · Cited by 67
“The questions are stratified into seven subscales, which include the following: seizure worry, overall quality of life, emotional well-being, energy/fatigue, cognitive functioning, medication effects, and social functioning [23].”
Background
Epilepsy Surgery Outcomes: Quality of Life and Seizure Control
Zupanc, M. L., Rubio, E. J. D. S., Werner, R. R., Schwabe, M. J., Mueller, W. M., Lew, S. M., Marcuccilli, C. J., O’Connor, S. E., Chico, M., Eggener, K. A., et al. (2009) · Pediatric Neurology · doi:10.1016/j.pediatrneurol.2009.07.018 · Cited by 67
Quality of life and comorbid medical and psychiatric conditions in temporal lobe epilepsy
Pulsipher, D. T., Seidenberg, M., Jones, J. E., & Hermann, B. P. (2006) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2006.07.014 · Cited by 67
“indicated that individuals with higher seizure frequency report decreased QOL [1,6–8].”
BackgroundMethodInfluentialSelf-citation
The ketogenic diet as a treatment option in adults with chronic refractory epilepsy: Efficacy and tolerability in clinical practice
Lambrechts, D. A. J. E., Wielders, L. H. P., Aldenkamp, A. P., Kessels, F., de Kinderen, R. J. A., & Majoie, M. (2012) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2012.01.002 · Cited by 66
“Quality of life (QOL) was evaluated at baseline, using the Quality of Life in Epilepsy Inventory (QOLIE-89) [19].”
Method
HIV/AIDS, Stigma and Children: A Literature Review
Deacon, H. J., & Stephney, I. M. (2008) · Cited by 65
The Goals of Medicine. Towards a Unified Theory
Brülde, B. (2001) · Health Care Analysis · doi:10.1023/a:1011385310274 · Cited by 66
“as in different outcome measures (Baker et al., 1994; Baker et al., 1998; Brock, 1993; Brülde et al., 1998; Devinsky et al., 1994; Devinsky et al., 1995; Fallowfield, 1994; Nordenfelt, 1991; Richt, 1991; Stewart et al., 1992; Vickrey et al., 1995; Vivier et al., 1995), or in descriptions of actual medical practices (C…”
Background
How to understand and address the cultural aspects and consequences of diagnosis of epilepsy, including stigma
Braga, P., Hosny, H., Kakooza‐Mwesige, A., Rider, F. K., Tripathi, M., & Guekht, A. B. (2020) · Epileptic Disorders · doi:10.1684/epd.2020.1201 · Cited by 64
Self-rated and assessed cognitive functions in epilepsy: Impact on quality of life
Gıovagnolı, A. R., Parente, A., Tarallo, A., Casazza, M., Franceschetti, S., & AVANZINI, G. (2014) · Epilepsy Research · doi:10.1016/j.eplepsyres.2014.06.002 · Cited by 64
Changes in Quality of Life in Epilepsy: How Large Must They Be to Be Real?
Wiebe, S., Eliasziw, M., & Matijevic, S. (2001) · Epilepsia · doi:10.1046/j.1528-1157.2001.081425.x · Cited by 64
Cognitive-behavioral group treatment program for adults with epilepsy in Hong Kong
Au, A., Chan, F., Li, K., Leung, P., Li, P., & Chan, J. (2003) · Epilepsy & Behavior · doi:10.1016/s1525-5050(03)00149-5 · Cited by 63
Disease characteristics and psychosocial factors: Explaining the expression of quality of life in childhood epilepsy
Ronen, G. M., Streiner, D. L., Verhey, L. H., Lach, L., Boyle, M. H., Cunningham, C. E., & Rosenbaum, P. (2010) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2010.02.023 · Cited by 63
Severity of anxiety and depression are related to a higher perception of adverse effects of antiepileptic drugs
Gómez-Arias, B., Crail‐Meléndez, D., Zapata, R. L., & Martínez-Juárez, I. E. (2012) · Seizure · doi:10.1016/j.seizure.2012.06.003 · Cited by 63
Quality of Life and Memory after Vagus Nerve Stimulator Implantation for Epilepsy
McGlone, J., Valdivia, I., Penner, M. R., Williams, J. L., Sadler, R. M., & Clarke, D. B. (2008) · Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques · doi:10.1017/s0317167100008854 · Cited by 63
Prospective validation of the short form liver disease quality of life instrument
Kanwal, F., Spiegel, B. M. R., Hays, R. D., Durazo, F. A., Han, S. B., Saab, S., Bolus, R. R., Kim, S. J., & Gralnek, I. M. (2008) · Alimentary Pharmacology & Therapeutics · doi:10.1111/j.1365-2036.2008.03817.x · Cited by 62
Self-citation
Gamma Knife surgery for hypothalamic hamartomas causing refractory epilepsy: preliminary results from a prospective observational study
Mathieu, D., Deacon, C., Pinard, C.-A., Kenny, B. G., & Duval, J. (2010) · Journal of neurosurgery · doi:10.3171/2010.8.gks101059 · Cited by 60
Impaired working memory monitoring in euthymic bipolar patients
Thompson, J. M., Gray, J. M., Hughes, J. H., Watson, S., Young, A. H., & Ferrier, I. N. (2007) · Bipolar Disorders · doi:10.1111/j.1399-5618.2007.00470.x · Cited by 62
Factors associated with utilization of healthcare resources among epilepsy patients
Bautista, R. E. D., Glen, E. T., Wludyka, P. S., & Shetty, N. K. (2008) · Epilepsy Research · doi:10.1016/j.eplepsyres.2008.01.003 · Cited by 60
Clinical epidemiology of posttraumatic epilepsy in a group of Chinese patients
Zhao, Y., Wu, H., Wang, X., Li, J., & Zhang, S. (2012) · Seizure · doi:10.1016/j.seizure.2012.02.007 · Cited by 59
Evolution of concepts in epilepsy surgery*
Engel, J. (2019) · Epileptic Disorders · doi:10.1684/epd.2019.1091 · Cited by 63
Quality of Life and Associated Factors among Adults with Epilepsy in Nigeria
Mosaku, K. S., Fatoye, F. O., Komolafe, M. A., Lawal, M. A., & Ola, B. A. (2006) · The International Journal of Psychiatry in Medicine · doi:10.2190/r80g-580x-x1h2-6936 · Cited by 58
Neuropsychiatric aspects of epilepsy in children
Dunn, D. W. (2003) · Epilepsy & Behavior · doi:10.1016/s1525-5050(03)00022-2 · Cited by 57
The development and preliminary validation of a scale measuring the impact of syncope on quality of life
Rose, M. S., Koshman, M.-L., Ritchie, D., & Sheldon, R. (2009) · Europace · doi:10.1093/europace/eup106 · Cited by 55
The biopsychosocial model and quality of life in persons with active epilepsy
Elliott, J. O., & Richardson, V. E. (2014) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2014.09.035 · Cited by 56
“The QOLIE-89 includes health perceptions, overall quality of life, physical function, role limitations-physical, role limitations-emotional, pain, working/driving/social function, energy/fatigue, emotional well-being, attention/concentration, health discouragement, seizure worry, memory, language, medication effects,…”
The Personal Impact of Epilepsy Scale (PIES)
Fisher, R. S., Nune, G. C., Roberts, S. E., & Cramer, J. A. (2014) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2014.09.060 · Cited by 56
Self-citation
Exploring psychiatric comorbidities and their effects on quality of life in patients with temporal lobe epilepsy and juvenile myoclonic epilepsy
Ertem, D. H., Dirican, A. C., Aydin, A., Baybaş, S., Sözmen, V., Öztürk, M., & Altunkaynak, Y. (2016) · Psychiatry and Clinical Neurosciences · doi:10.1111/pcn.12499 · Cited by 56
“The 17 subscales are as follows: Overall QOL, Emotional Well-Being, Role Limitations Due to Emotional Problems, Social Support, Social Isolation, Energy/Fatigue, Worry About Seizure, Medication Effects, Health © 2016 The Authors Psychiatry and Clinical Neurosciences © 2016 Japanese Society of Psychiatry and Neurology…”
Method
The impact of affectivity dispositions, self-efficacy and locus of control on psychosocial adjustment in patients with epilepsy
Gramstad, A., Iversen, E., & Engelsen, B. A. (2001) · Epilepsy Research · doi:10.1016/s0920-1211(01)00261-3 · Cited by 56
“PII: S 0920 -1211 (01 )00261 -3 1992; Dilorio et al., 1992a; Baker et al., 1993; Devinsky et al., 1995; Tedeman et al., 1995; Cramer et al., 1996).”
Development of the Smoking Cessation quality of life questionnaire
Olufade, A. O., Shaw, J. W., Foster, S. A., Leischow, S. J., Hays, R. D., & Coons, S. J. (1999) · Clinical Therapeutics · doi:10.1016/s0149-2918(00)87242-2 · Cited by 55
Self-citation
Depressive Symptoms in Epilepsy: Prevalence, Impact, Aetiology, Biological Correlates and Effect of Treatment with Antiepileptic Drugs
Miller, J. M., Kustra, R. P., Vuong, A., Hammer, A. E., & Messenheimer, J. A. (2008) · Drugs · doi:10.2165/00003495-200868110-00003 · Cited by 65
“questionnaire, measured by the Quality of Life in Epilepsy Invenself-report, clinical interview), and the nature and tory-89 (QOLIE-89),[25] compared with non-decharacteristics of study samples (e.”
Method
History of neuropsychology through epilepsy eyes.
Loring, D. (2010) · Archives of Clinical Neuropsychology · doi:10.1093/arclin/acq024 · Cited by 49
“However, Dodrill’s (1983) emphasis on psychosocial aspects of epilepsy in many ways anticipated Quality of Life as an important construct to characterize epilepsy and its treatment (Devinsky et al., 1995).”
Background
Gabapentin Versus Vigabatrin as First Add‐On for Patients with Partial Seizures That Failed to Respond to Monotherapy: A Randomized, Double‐Blind, Dose Titration Study
Lindberger, M., Ålenius, M., Frisén, L., Johannessen, S. I., Larsson, S., Malmgren, K., & Torason, T. (2000) · Epilepsia · doi:10.1111/j.1528-1157.2000.tb04607.x · Cited by 55
“Quality of life was assessed using the QOLIE-89, a self-assessment instrument developed to measure Health-Related Quality of Life (HRQOL) in epilepsy (10).”
Method
Evaluating Health‐Related Quality of Life Outcomes in Clinical Trials of Antiepileptic Drug Therapy
Leidy, N. K., Rentz, A. M., & Grace, E. M. (1998) · Epilepsia · doi:10.1111/j.1528-1157.1998.tb01446.x · Cited by 54
Treatments for patients with comorbid epilepsy and depression: A systematic literature review
Mehndiratta, P., & Sajatovic, M. (2013) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2013.03.029 · Cited by 50
Telephone Validation of the Quality of Life in Epilepsy Inventory‐89 (QOLIE‐89)
Leidy, N. K., Elixhauser, A., Rentz, A. M., Beach, R., Pellock, J. M., Schachter, S. C., & Willian, M. K. (1999) · Epilepsia · doi:10.1111/j.1528-1157.1999.tb01995.x · Cited by 54
LONG-TERM SEIZURES AND QUALITY OF LIFE AFTER EPILEPSY SURGERY COMPARED WITH MATCHED CONTROLS
Stavem, K., Bjørnæs, H., & Langmoen, I. A. (2008) · Neurosurgery · doi:10.1227/01.neu.0000315999.58022.1c · Cited by 53
Dissociation and its biological and clinical associations in functional neurological disorder: systematic review and meta-analysis
Campbell, M. C., Smakowski, A., Rojas-Aguiluz, M., Goldstein, L. H., Cardeña, E., Nicholson, T. R., Reinders, A. A. T. S., & Pick, S. (2022) · BJPsych Open · doi:10.1192/bjo.2022.597 · Cited by 61

Authors: Devinsky, O., Vickrey, B. G., Cramer, J., Perrine, K., Hermann, B., Meador, K., & Hays, R. D.
Affiliations: New York University Langone Orthopedic Hospital (US)
RAND Corporation (US)
Yale University (US)
University of Tennessee Health Science Center (US)
Augusta University (US)
University of California, Los Angeles (US)
ORCID: Devinsky, Orrin
Vickrey, Barbara G.
Cramer, Joyce
Perrine, Kenneth
Hermann, Bruce
Meador, Kimford
Hays, Ron D.
Venue: Epilepsia
Publisher: Wiley
Published: 1995-11
Volume: 36
Issue: 11
Pages: 1089-1104
ISSN: 0013-9580 (ISSN-L)
1528-1167
DOI: 10.1111/j.1528-1157.1995.tb00467.x
OpenAlex: W2124800861
Cited by: 634
References: 73
Citations by year: 2026: 16 · 2025: 16 · 2024: 14 · 2023: 11 · 2022: 12 · 2021: 17 · 2020: 17 · 2019: 20 · 2018: 14 · 2017: 21 · 2016: 14 · 2015: 23 · 2014: 32 · 2013: 21 · 2012: 15
FWCI: 11.64
Type: journal article
Language: en
Open access: closed
Licence: onlinelibrary.wiley.com/termsAndConditions#vor (vor, 3563 d)
Locations: Epilepsia (publishedVersion)
PubMed (publishedVersion)
Topics: Health Sciences › Medicine › Clinical Neurology › Epilepsy research and treatment
Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
Health Sciences › Nursing › Research and Theory › Health Education and Validation
Keywords: epilepsy, health-related quality of life, QOLIE-89, instrument development, RAND-36, patient-proxy agreement, construct validity, factor analysis, seizure frequency, epilepsy severity, mental health, cognitive function, physical health, health care utilization, neurotoxicity, self-esteem, attitudes toward epilepsy
MeSH terms: Adolescent, Adult, Aged, Attitude to Health, Epilepsy, Factor Analysis, Statistical, Female, Health Status, Humans, Male, Middle Aged, Personality Inventory, Psychometrics, Quality of Life, Self Concept, Severity of Illness Index, Reproducibility of Results, Prevalence

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Development of the Quality of Life in Epilepsy Inventory

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