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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“…similar reliability to the original 89-question version (Cramer et al., 1998; Devinsky et al., 1995), The QOLIE-31 is comprised of 7 subscales including seizure worry, overall quality of life, emotional well-being,…”
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Method
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Arousal in response to neutral pictures is modified in temporal lobe epilepsy
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Method
Balance and physical functioning in Spinocerebellar ataxias 3 and 10
Konno, K., Zonta, M. B., Guimarães, A. T. B., Camargo, C. H. F., Munhoz, R. P., Raskin, S., Ashizawa, T., & Teive, H. A. G. (2020) · Acta Neurologica Scandinavica · doi:10.1111/ane.13384 · Cited by 7
Postsurgical Treatment of Epilepsy
Berg, A. T. (2004) · Epiliepsy currents/Epilepsy currents · doi:10.1111/j.1535-7597.2004.44001.x · Cited by 7
Characterizing the spatio-temporal dynamics of the epileptogenic process with nonlinear EEG analyses
Elger, C. E., Mormann, F., Kreuz, T., Andrzejak, R. G., Rieke, C., Sowa, R., Florin, S., David, P., & Lehnertz, K. (2003) · IEEE International Workshop on Cellular Neural Networks and their Applications · doi:10.1109/cnna.2002.1035056 · Cited by 7
Epilepsia e trabalho
Tella, L. M. G., Fonseca, L. C., & Bertuqui, C. M. (2012) · Revista de Ciências Médicas · Cited by 7
Onset of poly-spike complexes in a mean-field model of human EEG and its application to absence epilepsy
Marten, F., Rodrigues, S., Benjamin, O., Terry, J., & Richardson, M. P. (2008) · Bristol Research (University of Bristol) · Cited by 7
Validation of the Taiwanese version of the Epilepsy Surgery Satisfaction Questionnaire (Tw-ESSQ-19)
Lin, P., Wiebe, S., Chou, C., Lu, Y., Lin, C., Hsu, S. P. C., Lee, C., & Yu, H. (2022) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2022.108768 · Cited by 6
Best clinical and research practice in adult epileptology
Krishnamoorthy, E. S., & Gilliam, F. G. (2009) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2009.03.024 · Cited by 6
Evaluation of Children and Adolescents with Epilepsy
MacAllister, W. S., & Sherman, E. M. S. (2014) · Springer eBooks · doi:10.1007/978-0-387-92826-5_2 · Cited by 6
Validity and reliability of the Persian epilepsy quality of life questionnaire
Ghaem, H., & Borhani-Haghighi, A. (2010) · Neurosciences · doi:10.17712/1658-3183.1808 · Cited by 6
Development of a patient-reported outcome measure for psychotherapeutic interventions in people with seizures: A mixed methods study
Michaelis, R., Meyer, S., Reuber, M., & Schöne, C. (2019) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2019.106464 · Cited by 6
Behavioral measures in animal studies: Relevance to patients with epilepsy
Heinrichs, S. C., & Bromfield, E. B. (2008) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2007.11.014 · Cited by 6
“A human analog of the well-being assessment for seizure-prone animals is the Quality of Life in Epilepsy inventory (QOLIE), developed to objectify overall health status and satisfaction with the circumstances of daily living [10].”
BackgroundMethod
Directions for future research
Hays, R. D. (1995) · Quality of Life Research · doi:10.1007/bf01833611 · Cited by 6
Self-citation
Quality of life measures in epilepsy
Birbeck, G. L., Kim, S., Hays, R. D., & Vickrey, B. G. (2000) · Neurology · doi:10.1212/wnl.54.9.1822 · Cited by 6
Self-citation
Overview of surgical treatment for epilepsy
Engel, J. (2015) · doi:10.1002/9781118936979.ch56 · Cited by 6
Afraid to go out: Poor quality of life with phobic anxiety in a large cross-sectional adult epilepsy center sample
Clary, H. M. M., Giambarberi, L., Floyd, W. N., & Hamberger, M. J. (2023) · Epilepsy Research · doi:10.1016/j.eplepsyres.2023.107092 · Cited by 5
Uncovering language deficits in focal epilepsy: Beyond the limits of noun naming and verbal fluency
Reardon, A. D., Gillinder, L., Copland, D. A., McMahon, K. L., & Brownsett, S. L. E. (2024) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2024.110181 · Cited by 5
“…have included subjective patient report of language difficulties as part of self-report measures looking at broader cognitive functioning and/or quality of life, including the Quality of Life in Epilepsy (QOLIE; e.g., [43]) and the Multiple Abilities Self-Report Questionnaire (MASQ; e.g., [44]).”
Health priorities and treatment preferences of adults with epilepsy: A narrative literature review with a systematic search
Hill, C. E., Vanderboll, K., Parent, J. M., Skolarus, L. E., & Zahuranec, D. B. (2025) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2025.110359 · Cited by 7
Effects of Drug Compliance on Quality of Life in Patients with Epilepsy
Acaroglu, G. (2016) · Journal of the Turkish Epilepsi Society · doi:10.5505/epilepsi.2016.36449 · Cited by 5
Development and Initial Validation of a Meniere's Disease Quality of Life Instrument: The MenQOL
Quimby, A. E., Brant, J. A., Staab, J. P., & Ruckenstein, M. J. (2024) · The Laryngoscope · doi:10.1002/lary.31478 · Cited by 5
Validation of the Spanish version of the Side Effect and Life Satisfaction Inventory in patients with epilepsy
Villanueva, V., Gil‐Nagel, A., Elices, E., Serratosa, J. M., Álvarez, J. C. S., Carreño, M., Salas‐Puig, J., & Porcel, J. (2008) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2008.09.003 · Cited by 5
Perceived change in life satisfaction following epilepsy diagnosis
Næss, S. C. K., Eriksen, J., & Tambs, K. (2009) · Scandinavian Journal of Public Health · doi:10.1177/1403494809103904 · Cited by 5
“in an instrument named QOLIE, an 89-item questionnaire aimed at patients with epilepsy [21].”
Method
Understanding the Patient Perspective of Seizure Severity in Epilepsy: Development of a Conceptual Model
Borghs, S., Tomaszewski, E. L., Halling, K., & de la Loge, C. (2016) · Patient · doi:10.1007/s40271-016-0165-0 · Cited by 5
Functional Hemispherectomy for Refractory Status Epilepticus in 2 Adults
McGinity, M. J., Andrade, N. S., Karkar, K. M., Caron, J.-L. R., Szabó, C. Á., & Papanastassiou, A. (2016) · World Neurosurgery · doi:10.1016/j.wneu.2016.06.086 · Cited by 5
Experiences of self-conscious emotions in temporal lobe epilepsy
Hennion, S., Szurhaj, W., Skrobala, E., Davière, J., Tyvaert, L., Derambure, P., & Delbeuck, X. (2019) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2018.10.028 · Cited by 5
Tratamiento con estimulación del nervio vago en pacientes con epilepsia resistente a los fármacos: experiencia en el Hospital Universitario Son Espases
Roldán, P., Brell, M., y Perla, C. P., Moreno, A., Barceló, I. B., Martínez, A. B., Chmielewska, I., & Ibáñez, J. (2013) · Neurocirugía · doi:10.1016/j.neucir.2013.04.003 · Cited by 5
Calidad de vida relacionada con la salud en niños con epilepsia de un hospital mexicano
Dávila-Avila, N. M., la Mora, J. D.-D., Plata, M. D. C. C., & Álvarez-Hernández, G. (2014) · Revista de Neurología · doi:10.33588/rn.5902.2014198 · Cited by 5
Factores pronósticos de la calidad de vida en pacientes con epilepsia
Orignales, T., Rivera, E., Troncoso, V. S., & Silva, C. M. (2004) · Cited by 5
Zonisamide: Physician and patient experiences
Marmarou, A., & Pellock, J. M. (2005) · Epilepsy Research · doi:10.1016/j.eplepsyres.2005.03.001 · Cited by 5
REVISÃO DA LITERATURA SOBRE AVALIAÇÃO DA QUALIDADE DE VIDA (QDV) DE ADULTOS COM EPILEPSIA. II - FACILIDADES NA ABORDAGEM DO TEMA *
Meneses, R. F., Ribeiro, J. L. P., & da Silva, A. M. (2002) · Portuguese National Funding Agency for Science, Research and Technology (RCAAP Project by FCT) · Cited by 5
Quality of life related to surgical treatment in patients with temporal lobe epilepsy due to mesial temporal sclerosis
Alonso, N. B., da Silva, T. I., Westphal-Guitti, A. C., Azevedo, A. M., Caboclo, L. O. S. F., Sakamoto, A. C., & Yacubian, E. M. T. (2006) · Journal of Epilepsy and Clinical Neurophysiology · doi:10.1590/s1676-26492006000700009 · Cited by 5

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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