Development and cross-cultural translations of a 31-item quality of life in epilepsy inventory
Abstract
PURPOSE: We report the development of a questionnaire to assess health-related quality-of-life (HRQOL) in people with epilepsy and the process of cross-cultural translations of the questionnaire. METHODS: A sample of 304 adults with epilepsy from 25 seizure clinics in the United States was used to derive an abbreviated questionnaire focusing on epilepsy-related issues from a longer, 89-item instrument (QOLIE-89). A rigorous forward-backward-forward system was used for cross-cultural translation. RESULTS: A 31-item questionnaire (QOLIE-31, version 1.0) resulted, comprising seven subscales covering general and epilepsy-specific domains. Subscale and total scores can be calculated. The subscales were grouped into two factors: Emotional/Psychological Effects (seizure worry, overall QOL, emotional well-being, energy/fatigue subscales) and Medical/Social Effects (medication effects, work-driving-social limits, cognitive function subscales). Cross-cultural translations were made from U.S.-English into Danish, Dutch, German, Canadian French, French, Italian, Spanish, Swedish, and U.K. English Versions 1.1. CONCLUSIONS: Our results support the reliability and validity of the QOLIE-31 (U.S.-English version 1.0) as a measure of HRQOLIE. Cross-cultural translations into nine other languages make it feasible to use the QOLIE-31 (version 1.1) in multinational clinical trials after validation in each population or concurrent with the clinical trial.
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The QOLIE-31 showed acceptable reliability and validity in patients with epilepsy.
“This scale was initially developed by Cramer et al. and showed acceptable reliability and validity in patients with epilepsy [32]”
From The Psychological Flexibility in Epilepsy Questionnaire (PFEQ): Psychometric properties of the Persian version (2022) · cites this paper as [32]
The most commonly used scale for assessing HRQoL was the Quality of Life in Epilepsy-31/-31-P/-89 (QOLIE-31/31-P/-89).
“The most commonly used scale for assessing HRQoL was the Quality of Life in Epilepsy-31/-31-P/-89 (QOLIE-31/31-P/-89). 51,52”
From Cochrane systematic review and meta-analysis of the impact of psychological treatments for people with epilepsy on health-related quality of life (2018) · cites this paper as [51]
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Lin, C., Saffari, M., Koenig, H. G., & Pakpour, A. H. (2017) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2017.10.008 · Cited by 91 · see citing works
Insomnia and Epilepsy: A Questionnaire-Based Study
Vendrame, M., Yang, B., Jackson, S., & Auerbach, S. H. (2013) · Journal of Clinical Sleep Medicine · doi:10.5664/jcsm.2410 · Cited by 91 · see citing works
Epilepsy and quality of life: what does really matter?
Tombini, M., Assenza, G., Quintiliani, L., Ricci, L., Lanzone, J., & Lazzaro, V. D. (2021) · Neurological Sciences · doi:10.1007/s10072-020-04990-6 · Cited by 88 · see citing works
Siebenbrodt, K., Willems, L. M., von Podewils, F., Mross, P. M., Strüber, M., Langenbruch, L. M., Bierhansl, L., Gorny, I., Schulz, J., Gaida, B., et al. (2023) · Neurological Research and Practice · doi:10.1186/s42466-023-00265-5 · Cited by 88 · see citing works
Antoine, J.-C. G., Cinotti, L., Tilikete, C., Bouhour, F., Camdessanch�, J. P., Confavreux, C., Vighetto, A., Renault‐Mannel, V., Michel, D., & Honnorat, J. (2000) · Annals of Neurology · doi:10.1002/1531-8249(200007)48:1 · Cited by 86 · see citing works
da Silva, T. I., Ciconelli, R. M., Alonso, N. B., Azevedo, A. M., Westphal-Guitti, A. C., Pascalicchio, T. F., Marques, C. M., Caboclo, L. O. S. F., Cramer, J. A., Sakamoto, A. C., et al. (2007) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2006.08.022 · Cited by 86 · see citing works
Patients' and neurologists' perception of epilepsy and psychogenic nonepileptic seizures
Whitehead, K., Kandler, R., & Reuber, M. (2013) · Epilepsia · doi:10.1111/epi.12087 · Cited by 85 · see citing works
“…report or endorse psychosocial stressors before the development of PNES, although they do not accept the etiologic relevance of these stressors and continue to use a (“physical”) epilepsy “prototype” to understand their condition (Binzer et al., 2004; Stone et al., 2004; Dickinson et al., 2011).”
BackgroundFactors contributing to depression in patients with epilepsy
Lee, S., Lee, S., & No, Y. (2009) · Epilepsia · doi:10.1111/j.1528-1167.2009.02387.x · Cited by 84 · see citing works
Impact of epilepsy surgery on seizure control and quality of life: A 26‐year follow‐up study
Mohammed, H., Kaufman, C. B., Limbrick, D. D., Steger-May, K., Grubb, R. L., Rothman, S. M., Weisenberg, J. L. Z., Munro, R., & Smyth, M. D. (2012) · Epilepsia · doi:10.1111/j.1528-1167.2011.03398.x · Cited by 84 · see citing works
Quality of life in adult patients with epilepsy and their family members
Imhof, R. M., Jaggi, S., Bonomo, A., Hediger, H., Eggenschwiler, P., Krämer, G., & Oberholzer, E. (2012) · Seizure · doi:10.1016/j.seizure.2012.11.012 · Cited by 84 · see citing works
Liu, A. A., Bryant, A. M., Jefferson, A., Friedman, D. J., Minhas, P., Barnard, S. N., Barr, W., Thesen, T., O’Connor, M. G., Shafi, M. M., et al. (2015) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2015.10.032 · Cited by 84 · see citing works
George, J., Kulkarni, C., & Sarma, G. R. K. (2015) · Value in Health Regional Issues · doi:10.1016/j.vhri.2014.07.009 · Cited by 83 · see citing works
Deep brain and cortical stimulation for epilepsy
Sprengers, M., Vonck, K. E. J., Carrette, E., Marson, A. G., & Boon, P. (2014) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd008497.pub2 · Cited by 83 · see citing works
Tombini, M., Assenza, G., Quintiliani, L., Ricci, L., Lanzone, J., Ulivi, M., & Lazzaro, V. D. (2020) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2020.107073 · Cited by 84 · see citing works
Determinants of quality of life in people with epilepsy and their gender differences
Yue, L., Yu, P., Zhao, D.-H., Wu, D., Zhu, G., Wu, X., & Hong, Z. (2011) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2011.08.022 · Cited by 81 · see citing works
Quality of life in seizure-free patients with epilepsy on monotherapy
Auriel, E., Landov, H., Blatt, I., Theitler, J., Gandelman‐Marton, R., Chistik, V., Margolin, N., Gross, B., Parmet, Y., Andelman, F., et al. (2008) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2008.09.027 · Cited by 80 · see citing works
“The second questionnaire was the Quality of Life in Epilepsy Inventory (QOLIE31), a widely used instrument developed especially for the evaluation of QOL in patients with epilepsy and one that has been extensively tested for validity and reliability [14,15].”
MethodHufnagel, A., Ben‐Menachem, E., Gabbai, A. A., Falcão, A. C., Almeida, L., & Soares-da-Silva, P. (2012) · Epilepsy Research · doi:10.1016/j.eplepsyres.2012.07.014 · Cited by 80 · see citing works
Karakis, I., Montouris, G., Piperidou, C., Luciano, M. S., Meador, K. J., & Cole, A. J. (2013) · Seizure · doi:10.1016/j.seizure.2013.09.011 · Cited by 78 · see citing works
Schachter, S. C. (2006) · Expert Review of Neurotherapeutics · doi:10.1586/14737175.6.1.111 · Cited by 78 · see citing works
Chaytor, N., Ciechanowski, P., Miller, J. W., Fraser, R., Russo, J., Unutzer, J., & Gilliam, F. (2011) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2011.01.017 · Cited by 76 · see citing works
Differentiating anxiety and depression symptoms in patients with partial epilepsy
Cramer, J. A., Brandenburg, N. A., & Xu, X. (2005) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2005.02.017 · Cited by 76 · see citing works
Toledo, M., Whitesides, J., Schiemann, J., Johnson, M. E., Eckhardt, K., McDonough, B., Borghs, S., & Kwan, P. (2016) · Epilepsia · doi:10.1111/epi.13416 · Cited by 75 · see citing works
Lamotrigine extended-release as adjunctive therapy for partial seizures
Naritoku, D. K., Warnock, C. R., Messenheimer, J. A., Borgohain, R., Evers, S., Guekht, A. B., Va, K., Lee, B. I., & Pohl, L. R. (2007) · Neurology · doi:10.1212/01.wnl.0000277698.33743.8b · Cited by 75 · see citing works
Boling, W., Means, M. J., & Fletcher, A. M. (2018) · Brain Sciences · doi:10.3390/brainsci8040059 · Cited by 72 · see citing works
Epilepsy and quality of life: socio-demographic and clinical aspects, and psychiatric co-morbidity
Tedrus, G. M. A. S., Fonseca, L. C., & Carvalho, R. M. (2013) · Arquivos de Neuro-Psiquiatria · doi:10.1590/0004-282x20130044 · Cited by 69 · see citing works
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 · see citing works
“, 1995), with subsequent short-forms of 31, and 10 items (Cramer et al., 1998).”
BackgroundMethodInvestigation of social and emotion information processing in temporal lobe epilepsy with ictal fear
Reynders, H. J., Broks, P., Dickson, J. M., Lee, C. E., & Turpin, G. (2005) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2005.07.013 · Cited by 68 · see citing works
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 · see citing works
“: The Quality of Life in Epilepsy Inventory (QOLIE-31) was initially designed to assess the effect of treatment on epilepsy-associated issues and the patient’s overall health-related quality of life (HRQOL) [21,22].”
MethodExploration of Changes in Health-Related Quality of Life after 3 Months of Vagus Nerve Stimulation
Cramer, J. A. (2001) · Epilepsy & Behavior · doi:10.1006/ebeh.2001.0248 · Cited by 67 · see citing works
Health literacy, social cognition constructs, and health behaviors and outcomes: A meta-analysis.
McAnally, K., & Hagger, M. S. (2023) · Health Psychology · doi:10.1037/hea0001266 · Cited by 69 · see citing works
Meldolesi, G., Gennaro, G. D., Quarato, P. P., Esposito, V., Grammaldo, L. G., Morosini, P., Cascavilla, I., & Picardi, A. (2007) · Epilepsy Research · doi:10.1016/j.eplepsyres.2007.08.005 · Cited by 65 · see citing works
Satisfaction with life domains in people with epilepsy
Kobau, R., Luncheon, C., Zack, M. M., Shegog, R., & Price, P. H. (2012) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2012.09.013 · Cited by 64 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
Bhalla, D., Chea, K., Hun, C., Vannareth, M., Huc, P., Chan, S., Sebbag, R., Gérard, D., Dumas, M., Oum, S., et al. (2012) · PLoS ONE · doi:10.1371/journal.pone.0046296 · Cited by 63 · see citing works
“Information on stigma was derived using the Jacoby stigma questionnaire [6] and information on QOL was collected using 31 item QOL in epilepsy (QOLIE-31) questionnaire [7].”
MethodAssessment of quality of life among the elderly with epilepsy
Laccheo, I., Ablah, E. A., Heinrichs, R. J., Sadler, T. L., Baade, L. E., & Liow, K. K. (2007) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2007.09.003 · Cited by 63 · see citing works
Sperling, M. R., Klein, P., & Tsai, J. (2017) · Epilepsia · doi:10.1111/epi.13705 · Cited by 63 · see citing works
- Authors
- Cramer, J. A., Perrine, K., Devinsky, O., Bryant‐Comstock, L., Meador, K., & Hermann, B.
- Affiliations
- VA Connecticut Healthcare System (US)
- New York University Langone Orthopedic Hospital (US)
- Augusta University (US)
- University of Wisconsin–Madison (US)
- Corresponding author
- Cramer, Joyce A.
- Venue
- Epilepsia
- Publisher
- Wiley
- Published
- 1998-01
- Volume
- 39
- Issue
- 1
- Pages
- 81-88
- ISSN
- 0013-9580 (ISSN-L)
- 1528-1167
- OpenAlex
- W2021074267
- Cited by
- 782
- References
- 22
- Citations by year
- 2026: 51 · 2025: 63 · 2024: 46 · 2023: 43 · 2022: 62 · 2021: 49 · 2020: 48 · 2019: 29 · 2018: 29 · 2017: 31 · 2016: 21 · 2015: 38 · 2014: 37 · 2013: 30 · 2012: 23
- FWCI
- 6.48
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Epilepsia (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Epilepsy research and treatment
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Social Sciences › Education › Health Education and Validation
- Keywords
- epilepsy, health-related quality of life, QOLIE-31, QOLIE-89, cross-cultural translation, questionnaire development, seizure worry, medication effects, fatigue, cognitive function, psychometric validation, international clinical trials
- MeSH terms
- Adolescent, Adult, Canada, Cross-Cultural Comparison, Epilepsy, Europe, Female, Health Status Indicators, Humans, Male, Middle Aged, Psychometrics, Quality of Life, Surveys and Questionnaires, Translations, United States, Reproducibility of Results, Sickness Impact Profile
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