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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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“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]
In the citing paper
“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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Self-management practices associated with quality of life for adults with epilepsy
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“The QOLIE-31-P includes 7 subscales: Seizure Worry, Overall QoL, Emotional Well-Being, Energy/Fatigue, Cognitive Functioning, Medication Effects, and Social Functioning; an Overall Score is calculated as a weighted composite of the 7 subscales.”
InfluentialCognitive decline and quality of life after resective epilepsy surgery
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“These responses can yield seven individual scores (per subtest) and a total (composite) score (14).”
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Velez, F. F., Bond, T. C., Anastassopoulos, K. P., Wang, X., Sousa, R. P., Blum, D. E., & Cramer, J. A. (2017) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2016.10.027 · Cited by 17
Challenges in epilepsy—The perspective of Norwegian epilepsy patients
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Bagic, A. I., Verner, R., Afra, P., Benbadis, S. R., Afra, P., Bagic, A. I., Benbadis, S. R., Nune, G. C., Fakhoury, T. A., Helmers, S. L., et al. (2023) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2023.109333 · Cited by 16
“A QOLIE-31 ‘‘overall score” is obtained using a weighted average of the multi-arm scale scores and was computed at baseline and week 12 for each patient.”
MethodInfluentialEffects of stigma on the quality of life in patients with epilepsy
Hu, C., Zhao, Y., & Xiao, Z. (2024) · Acta Epileptologica · doi:10.1186/s42494-024-00154-7 · Cited by 16
“This scale covers 31 items in total and consists of 7 subscales including worry about new seizures, emotion, well-being, energy and fatigue, cognitive impairment, medication effect, and social function [26].”
BackgroundInoue, Y., 稲吉, 大., 笠井, 良., Onuma, T., 笹川, 睦., 八木, 和., & Cramer, J. A. (2009) · てんかん研究 · doi:10.3805/jjes.27.22 · Cited by 16
Socioeconomic disparities in patients with psychogenic nonepileptic seizures and their caregivers
Teagarden, D. L., Morton, M. L., Janocko, N. J., Groover, O., Villarreal, H. K., Evans, L., Drane, D. L., & Karakis, I. (2020) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2020.107160 · Cited by 16
Ogundare, T., Adebowale, T. O., & Okonkwo, O. (2020) · Quality of Life Research · doi:10.1007/s11136-020-02643-x · Cited by 16
Wang, W., Yu, H., Yen, D., Lin, Y., Kwan, S., Chen, C., & Hua, M. (2013) · Epilepsia · doi:10.1111/epi.12141 · Cited by 16
“The QOLIE-31 (Cramer et al., 1998) is an abbreviated version of the QOLIE-89, comprising seven subscales: overall quality of life, seizure worry, emotional wellbeing, cognitive, energy/fatigue, medication effects, and social function.”
MethodInfluentialAnalysis of quality of life among adolescents with epilepsy
Andelman, F. (2000) · International Journal of Adolescent Medicine and Health · doi:10.1515/ijamh.2000.12.s1.17 · Cited by 16
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“Quality of life will be assessed with the Quality of Life in Epilepsy (QOLIE-31) self-administered questionnaire which comprises 7 components including seizure worry, overall quality of life, emotional well-being, energy-fatigue, cognitive functioning, medication effect, and social function [25, 26].”
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Brandt, C., Dimova, S., Elmoufti, S., Laloyaux, C., Nondonfaz, X., & Klein, P. (2022) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2022.108967 · Cited by 15
“The standardized mean difference (SMD) according to Hedges’ g was calculated for mean change from baseline in QOLIE-31-P and HADS scores.”
MethodInfluentialQuality of life after surgery for temporal lobe epilepsy: A 5-year follow-up
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Sawh, S. C., Newman, J., Deshpande, S., & Jones, P. M. (2013) · PeerJ · doi:10.7717/peerj.114 · Cited by 15
Mukuria, C., Young, T. A., Keetharuth, A. D., Borghs, S., & Brazier, J. E. (2016) · Quality of Life Research · doi:10.1007/s11136-016-1483-3 · Cited by 15
Filho, H. D. S. M., Gomes, M. D. M., & Fontenelle, L. M. C. (2005) · Arquivos de Neuro-Psiquiatria · doi:10.1590/s0004-282x2005000300004 · Cited by 15
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Hu, T., Xie, H., Shan, M., Sang, L., Yang, B., Zhang, Q., Gao, D., Jiao, Y., Guo, Q., Li, S., et al. (2025) · BMC Medicine · doi:10.1186/s12916-025-04465-5 · Cited by 15
“Additionally, the seven subscales of the QOLIE-31 were also evaluated to assess domain-specific changes in quality of life [24].”
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“[9] observed further improvement in HRQoL with greater reductions in seizure frequency.”
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Caregiver burden in psychogenic non-epileptic seizures
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Tradução e adaptação cultural do Quality of Life in Epilepsy (QOLIE-31)
da Silva, T. I., Marques, C. M., Alonso, N. B., Azevedo, A. M., Westphal-Guitti, A. C., Caboclo, L. O. S. F., Sakamoto, A. C., & Yacubian, E. M. T. (2006) · Journal of Epilepsy and Clinical Neurophysiology · doi:10.1590/s1676-26492006000300011 · Cited by 14
Depression and Anxiety in Adult Persons With Epilepsy and Their Caregivers
Tsamakis, K., Teagarden, D. L., Villarreal, H. K., Morton, M. L., Janocko, N. J., Groover, O., Loring, D. W., Drane, D. L., & Karakis, I. (2021) · The Journal of Nervous and Mental Disease · doi:10.1097/nmd.0000000000001436 · Cited by 13
“QOL was evaluated by completing the Quality of Life in Epilepsy 31 (QOLIE-31) instrument (Cramer et al., 1998).”
MethodZhong, R., Li, Z., Chen, Q., Zhang, H., Zhang, X., & Lin, W. (2022) · BMC Psychiatry · doi:10.1186/s12888-022-04154-0 · Cited by 13
“Quality of life was measured using the Quality of Life in Epilepsy-31 (QOLIE-31) inventory [32, 33], an epilepsy-specific measure of self-perceived quality of life that consists of 31 items in 7 domains: (1) seizure worry, (2) overall quality of life, (3) emotional well-being, (4) energy/fatigue, (5) cognitive functio…”
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Validation of the Child Feeding Questionnaire among Saudi pre-schoolers in Jeddah city
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“The Arabic version of the Child Feeding Questionnaire Mothers completed the CFQ-A in Arabic language, following a forward–backward translation process conducted by bilingual professionals(10,38).”
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Kuramochi, I., Iwayama, T., Brandt, C., Yoshimasu, H., Bien, C. G., & Hagemann, A. (2023) · Epilepsia Open · doi:10.1002/epi4.12765 · Cited by 13
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“[4] Several tools have been developed to estimate QOL in PWE in different settings such as drug trials, epilepsy surgery programs and for general purposes – QOLIE‑31, [5] QOLIE‑10, [6] or short form 36‑SF36.”
Memory outcome following left anterior temporal lobectomy in patients with a failed Wada test
Rathore, C., Alexander, A., Sarma, P. S., & Radhakrishnan, K. (2015) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2015.02.011 · Cited by 13
An evaluation of the psychosocial impact of epilepsy on marriage in the United Kingdom
Deli, A., Kinariwalla, N., Calvello, C., Capelli, V., Neale, M., Henderson, R., Tristram, M., & Sen, A. (2019) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2019.03.012 · Cited by 13
Hixson, J., Gidal, B. E., Pikalov, A., Zhang, Y., Mehta, D. A., Blum, D. E., Cantu, D., & Grinnell, T. (2021) · Epilepsy Research · doi:10.1016/j.eplepsyres.2021.106561 · Cited by 13
Zhang, H., Zhong, R., Chen, Q., Guo, X., Han, Y., Zhang, X., & Lin, W. (2021) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2021.108448 · Cited by 13
Picot, M., Jaussent, A., Kahane, P., Crespel, A., Gélisse, P., Hirsch, É., Derambure, P., Dupont, S., Landré, E., Chassoux, F., et al. (2008) · Neurochirurgie · doi:10.1016/j.neuchi.2008.03.003 · Cited by 13
Assessment of tolerability in elderly patients: Changing to lamotrigine therapy
Evans, B. K., Kustra, R. P., & Hammer, A. E. (2007) · The American Journal of Geriatric Pharmacotherapy · doi:10.1016/j.amjopharm.2007.06.001 · Cited by 13
Quality of life and the self-perception impact of epilepsy in three different epilepsy types
Vidal-Dourado, M., Alonso, N. B., Martins, H. H., Oliveira, A. R. C., Vancini, R. L., de Lima, C., Dubas, J. P., Caboclo, L. O. S. F., Guilhoto, L. M. D. F. F., & Yacubian, E. M. T. (2007) · Journal of Epilepsy and Clinical Neurophysiology · doi:10.1590/s1676-26492007000400009 · Cited by 13
Hawari, I., Syeban, Z., & Lumempouw, S. F. (2007) · Medical Journal of Indonesia · doi:10.13181/mji.v16i2.265 · Cited by 13
Davoudi, M., Lundgren, T., Jansson-Fröjmark, M., Saeedipour, Z., & Badinlou, F. (2022) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2022.108672 · Cited by 12
“and showed acceptable reliability and validity in patients with epilepsy [32].”
BackgroundInterstitial Thermal Therapy in Mesial Temporal Lobe Epilepsy
Landazuri, P., Cheng, J. J., Leuthardt, E. C., Kim, A. H., Southwell, D. G., Fecci, P. E., Neimat, J. S., Sun, D. A., Lega, B. C., Panov, F. E., et al. (2025) · JAMA Neurology · doi:10.1001/jamaneurol.2025.1897 · Cited by 12
Cano-López, I., Lozano-García, A., Catalán-Aguilar, J., Hampel, K., Villanueva, V., & González-Bono, E. (2022) · Quality of Life Research · doi:10.1007/s11136-022-03306-9 · Cited by 10
Bala, A., Olejnik, A., Kułak, M., Rysz, A., Dziedzic, T. A., Nowak, A., Marchel, A., & Kunert, P. (2024) · Brain Sciences · doi:10.3390/brainsci14030241 · Cited by 12
“For the assessment of patients’ psychological status, we used two questionnaires: (a) Quality of Life in Epilepsy Inventory-Patient-Weighted (QoLIE-31-P) [29] is a widely utilized questionnaire designed to assess the quality of life in adults with epilepsy.”
MethodNeuropsychological Rehabilitation for Epilepsy in India: Looking Beyond the Basics
Sharma, S., Nehra, A., Pandey, S., Tripathi, M., Srivastava, A. K., Padma, M. V., Garg, A. K., Pandey, R. M., Chandra, S. P., & Tripathi, M. (2024) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2024.109703 · Cited by 12
Maschio, M. C. E., Perversi, F., & Maialetti, A. (2024) · Frontiers in Neurology · doi:10.3389/fneur.2024.1480900 · Cited by 14
The impact of cognitive impairment due to epilepsy on quality of life: What do we know?
Aliyianis, T. S., & Winston, G. P. (2025) · Epilepsy Research · doi:10.1016/j.eplepsyres.2025.107592 · Cited by 12
“The QOLIE-89 is the full version, while the QOLIE-31 removes the SF-36 content and condenses all of the scales into 7 (Cramer et al., 1998), and the QOLIE-10 removes cognition almost entirely, focusing instead on epilepsy-specific indicators of QOL for 3 scales (Cramer et al., 1996).”
Deleo, F., Quintas, R. M. M., Pastori, C., Pappalardo, I., Didato, G., Giacomo, R. D., de Curtis, M., & Villani, F. S. (2020) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2020.107170 · Cited by 12
Trinka, E., Rocamora, R., Chaves, J., Moreira, J., Ikedo, F., Soares-da-Silva, P., & the BIA‐2093‐311/EXT Investigators Study Group (2020) · Epilepsia · doi:10.1111/epi.16666 · Cited by 12
The burden of disease of idiopathic/genetic generalized epilepsy – A nationwide online survey
Mangaard, S. B., Gesche, J., Delcomyn, L., & Beier, C. P. (2021) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2021.108232 · Cited by 12
“(II) Questions about current education, work, and the impact of epilepsy on quality of life (from the Quality of Life-31 questionnaire [17]) and activities of daily living (adopted from the Headache impact test [18]).”
Treatment of epilepsy in daily clinical practice: have outcomes improved over the past 10 years?
Wassenaar, M., van Heijl, I., Leijten, F. S. S., Linden, P., Uijl, S. G., Egberts, T. C. G., & Carpay, J. A. (2013) · Journal of Neurology · doi:10.1007/s00415-013-7058-0 · Cited by 12
Quality of life of patients with epilepsy in Malaysia
Mohamed, S., Gill, J. S., & Tan, C. T. (2012) · Asia-Pacific Psychiatry · doi:10.1111/j.1758-5872.2012.00192.x · Cited by 12
“(Cramer et al., 1998) QOLIE-31 is a self-reported questionnaire of healthrelated quality of life for adults (18 years and older) with epilepsy where lower scores indicate poor quality of life.”
BackgroundQuality of life among women with epilepsy during their reproductive years
Santos, A. M. C., Castro‐Lima, H., Matos, M. A., & Brito, M. B. (2018) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2018.04.028 · Cited by 12
Puri, I., Dash, D., Padma, M. V., & Tripathi, M. (2018) · Journal of Epilepsy Research · doi:10.14581/jer.18013 · Cited by 12
Quality of life after switching to generic levetiracetam – A prospective comparative study
Olsson, P., Reimers, A., & Källén, K. (2019) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2019.04.029 · Cited by 12
Mantoan, M. A. S., da Silva, T. I., Alonso, N. B., Noffs, M. H. D. S., Marques, C. M., Rios, L. B., Azevedo, A. M., Westphal-Guitti, A. C., Sakamoto, A. C., & Yacubian, E. M. T. (2006) · Journal of Epilepsy and Clinical Neurophysiology · doi:10.1590/s1676-26492006000700004 · Cited by 12
Suh, G., & Lee, S. K. (2009) · Psychiatry Investigation · doi:10.4306/pi.2009.6.3.185 · Cited by 12
Quality of life as an outcome measure for epilepsy clinical trials.
Cramer, J. A. (1997) · Pharmacy World & Science · doi:10.1023/a:1008607109347 · Cited by 12
Health outcomes in persons with epilepsy
Gilliam, F. G. (2001) · Neurologic Clinics · doi:10.1016/s0733-8619(05)70026-8 · Cited by 12
Slow repetitive transcranial magnetic stimulation in refractory juvenile myoclonic epilepsies
Özek, S. Ü., Gürses, C., Bebek, N., Baykan, B. B., Gökyiğit, A., & Öge, A. E. (2020) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2020.107479 · Cited by 10
Metadata
- 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 › 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-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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