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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MethodSelf-citation
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Method
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Barbosa, F. D., Guerreiro, M. M., & de Souza, E. A. P. (2008) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2008.03.005 · Cited by 24
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“This clinical condition is characterized by the presence of recurrent seizures [2, 3], resulting in behavioral and cognitive impairments [4, 5] that significantly affect quality of life [6] and can even lead to death [7, 8].”
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“Additionally, two self-report questionnaires for assessing symptoms of depression (Beck Depression Inventory-II [BDI-II]) [20] and quality of life (Quality of Life in Epilepsy Inventory-31 [QOLIE-31]) [21] were performed where applicable.”
Method
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“The Quality of Life in Epilepsy‐31 (QOLIE‐31)[7,8] is a health‐related quality of life survey for adults (>18 years) with epilepsy.”
Background
Development of a core outcome set for quality of life for adults with drug‐resistant epilepsy: A multistakeholder Delphi consensus study
Chiang, S., Moss, R., Stern, J. M., Hughes, I., Josephson, S. A., Pearce, J. R., Kopald, B. E., Patel, A. D., & Rao, V. R. (2022) · Epilepsia · doi:10.1111/epi.17461 · Cited by 22
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“…51(10):2089–2097, 2010 doi: 10.1111/j.1528-1167.2010.02584.x questionnaires validated previously on individuals with epilepsy, the Quality of Life in Epilepsy-31 (QOLIE-31; Devinsky et al., 1995; Cramer et al., 1998) and the Subjective Handicap of Epilepsy Scale (SHE; O’Donoghue et al., 1998).”
BackgroundInfluential
Characterization and prediction of the recognition of emotional faces and emotional bursts in temporal lobe epilepsy
Hennion, S., Szurhaj, W., Duhamel, A., Lopes, R., Tyvaert, L., Derambure, P., & Delbeuck, X. (2015) · Journal of Clinical and Experimental Neuropsychology · doi:10.1080/13803395.2015.1068280 · Cited by 22
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Method
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Self-citation
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Development of a measure of the impact of chronic parental illness on adolescent and adult children. The Parental Illness Impact Scale (Parkinson's disease)
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Quality of life and epilepsy: the liverpool experience
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Which clinical and neuropsychological factors are responsible for cognitive impairment in patients with epilepsy?
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Psychiatric symptoms are the strongest predictors of quality of life in patients with drug-resistant epilepsy or psychogenic nonepileptic seizures
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Psychometric evaluation of the Persian version of the quality of life in epilepsy inventory-31.
Mohammadi, N., Kian, S., Davoudi, F., Nia, S. M. A. A., & Nojomi, M. (2013) · Europe PMC (PubMed Central) · Cited by 21
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Self-citation
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Health-related quality of life assessment in chronic kidney disease
Devine, E. B., Smith, K. L., Stehman‐Breen, C. O., & Patrick, D. L. (2003) · Expert Review of Pharmacoeconomics & Outcomes Research · doi:10.1586/14737167.3.1.89 · Cited by 21
Mood disorders are linked to health-related quality of life in epilepsy
Cramer, J. A. (2002) · Epilepsy & Behavior · doi:10.1016/s1525-5050(02)00533-4 · Cited by 20
Self-citation
A survey of quality of life in adolescents with epilepsy in Iran
Zamani, G., Shiva, S., Mohammadi, M., Gharaie, J. M., & Rezaei, N. (2014) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2014.02.012 · Cited by 20
Adaptation and evaluation of the Liverpool Seizure Severity Scale and Liverpool Quality of Life battery for American epilepsy patients.
Rapp, S., Shumaker, S. A., Smith, T. R., Gibson, P., Berzon, R. A., & Hoffman, R. D. (1998) · Quality of Life Research · doi:10.1023/a:1024942215515 · Cited by 20
Improvement in quality of life after initiation of lamotrigine therapy in patients with epilepsy in a naturalistic treatment setting
Allain, H., Schück, S., Nachit‐Ouinekh, F., Plouin, P., Brunon, A.-M., Boulliat, J., Mercier, F., Slama, A., Baulac, M., & Hasnaoui, A. E. (2007) · Seizure · doi:10.1016/j.seizure.2006.11.009 · Cited by 20
Impact of intellectual and developmental disability on quality-of-life priorities in adults with epilepsy
Chiang, S., Moss, R., Meskis, M. A., Vogel‐Farley, V. K., Sullivan, J. E., Patel, A. D., & Rao, V. R. (2021) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2021.108282 · Cited by 19
“Measurement of HR-QOL among adults with IDD-E often employs instruments developed for use in the adult population with epilepsy without IDD [12–14] or modification of pediatric scales [6–10,15 ], Here, we hypothesize that the HR-QOL priorities among adults with IDD-E differ from those of the adult…”
Method
Vulnerability to psychogenic non-epileptic seizures is linked to low neuropeptide Y levels
Winterdahl, M., Miani, A., Vercoe, M., Ciovica, A., Uber-Zak, L., Rask, C. U., & Zak, P. J. (2017) · Stress · doi:10.1080/10253890.2017.1378638 · Cited by 19
The Serbian QOLIE-AD-48: Translation, cultural adaptation, and preliminary psychometric evaluation
Stevanović, D., Lozanović, D., Jović, N., & Sarenac, M. (2005) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2005.05.007 · Cited by 19
Quality of life in the elderly with epilepsy
Devinsky, O. (2004) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2004.09.011 · Cited by 19
Self-citation
Self-management practices associated with quality of life for adults with epilepsy
Quon, R. J., Andrew, A. S., Schmidt, S. S., Escoffery, C., Schommer, L. M., Chu, F., Henninger, H. L., Nagle, K. J., Streltzov, N. A., & Jobst, B. C. (2019) · Journal of Neurology · doi:10.1007/s00415-019-09503-w · Cited by 18
Neuropsychiatric symptoms, seizure severity, employment, and quality of life of Jordanians with epilepsy
Altalib, H. H., Kasasbeh, A. S., Suleiman, M. J., Cong, X., Liu, H., Mohiuddin, S., & Bahou, Y. G. (2013) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2013.01.013 · Cited by 18
Expectations prior to epilepsy surgery: An exploratory comparison of men and women
Bower, C. M., Hays, R. D., Devinsky, O., Spencer, S. S., Sperling, M. R., Haut, S., Vassar, S. D., & Vickrey, B. G. (2008) · Seizure · doi:10.1016/j.seizure.2008.09.001 · Cited by 18
Self-citation
Health behavior in teens with epilepsy: How do they compare with controls?
Yu, C., Lee, A., Wirrell, E. C., Sherman, E. M. S., & Hamiwka, L. D. (2008) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2007.12.018 · Cited by 18
Effects of adjunctive lacosamide on mood and quality of life in patients with epilepsy
Nakhutina, L., Kunnakkat, S., Coleman, M., Lushbough, C., Arnedo, V., Soni, N., & Grant, A. C. (2017) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2017.05.001 · Cited by 18
Responsiveness of the Quality of Life in Epilepsy Inventory (QOLIE-89) in an Antiepileptic Drug Trial
Kim, S., Hays, R. D., Birbeck, G. L., & Vickrey, B. G. (2003) · Quality of Life Research · doi:10.1023/a:1022209105926 · Cited by 18
“HRQOL was assessed with the Quality of Life in Epilepsy (QOLIE)-89 [18, 19] instrument completed by subjects at baseline and at the 28-week follow-up.”
MethodSelf-citation
Impact of a Seizure Disorder Disease Management Program on Patient-Reported Quality of Life
Gunter, M. J., Brixner, D. L., Worley, A. V., Carter, S., & Gregory, C. (2004) · Disease Management · doi:10.1089/dis.2004.7.333 · Cited by 18
“Another potential limitation is the lack of numerical balance between intervention and control clinics (9 and 3, respectively).”
(Cost)-effectiveness of a multi-component intervention for adults with epilepsy: study protocol of a Dutch randomized controlled trial (ZMILE study)
Leenen, L. A. M., Wijnen, B. F. M., de Kinderen, R. J. A., Majoie, M., Heugten, C. M. V., & Evers, S. (2014) · BMC Neurology · doi:10.1186/s12883-014-0255-3 · Cited by 17
“In addition, for each domain, questions regarding how much distress a person feels about problems and worries related to epilepsy are included [42].”
The reliability and validity of the Revised Liverpool Impact of Epilepsy Scale for use in people with new-onset epilepsy
Crossley, J., Jacoby, A., & Baker, G. A. (2013) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2012.11.046 · Cited by 17
The Portland Neurotoxicity Scale
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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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