Cited by 782Epilepsy research and treatmentHealth Systems, Economic Evaluations, Quality of LifeHealth Education and Validation

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Development and cross-cultural translations of a 31-item quality of life in epilepsy inventory

Cramer, Joyce A., Perrine, Kenneth, Devinsky, Orrin, Bryant‐Comstock, Lynda, Meador, Kimford, Hermann, Bruce·1998·Epilepsia

DOI 10.1111/j.1528-1157.1998.tb01278.x

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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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Impact of educational actions on the quality of life of patients with epilepsy: A randomised controlled trial
Fontaine, S., Gautier, L., Diependaele, A. S., Hamieh, M., Morello, R., Guillouët, S., & Bertran, F. (2023) · Epilepsy Research · doi:10.1016/j.eplepsyres.2023.107128 · Cited by 8
Factors affecting quality of life in Hungarian adults with epilepsy: A comparison of four psychiatric instruments
Kováts, D., Császár, N., Haller, J., Juhos, V., Sallay, V., Békés, J., Kelemen, A., Fabó, D., Rásonyi, G., Folyovich, A., et al. (2017) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2017.04.035 · Cited by 8
Does screening for adverse effects improve health outcomes in epilepsy?
Franco, V., Canevini, M. P., Sarro, G. D., Fattore, C., Fedele, G., Galimberti, C. A., Gatti, G., Neve, A. L., Rosati, E., Specchio, L. M., et al. (2020) · Neurology · doi:10.1212/wnl.0000000000009880 · Cited by 8
Évaluation médico-économique de la chirurgie des épilepsies partielles pharmaco-résistantes de l’adulte. Étude coût-efficacité - Résultats préliminaires
Picot, M., Neveu, D., Kahane, P., Crespel, A., Gélisse, P., Hirsch, É., Derambure, P., Dupont, S., Landré, E., Chassoux, F., et al. (2004) · Revue Neurologique · doi:10.1016/s0035-3787(04)71217-5 · Cited by 8
Development and preliminary evaluation of the psychometric properties of the psychological flexibility in epilepsy questionnaire (PFEQ)
Burket, L., Parling, T., Jansson-Fröjmark, M., Reuterskiöld, L., Ahlqvist, J., Shanavazh, S., Reinebo, G., Vinnars, B., Beckman, M., Bohman, B., et al. (2021) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2020.107685 · Cited by 7
Patient complexity, depression, and quality of life in patients with epilepsy at an epilepsy center in Japan
Kishi, Y., Takumi, I., Yamamoto, H., Ishimaru, T., & THURBER, S. D. (2022) · Epilepsia Open · doi:10.1002/epi4.12614 · Cited by 7
RANO seizure working group-Tumor-Related Epilepsy Assessment Tool (RANO-TREAT) to assess seizure control for glioma treatment trials and clinical practice
Avila, E. K., Reiner, A. S., Armstrong, T. S., Aaroe, A., Cunningham, E. A., Brown, J. M., Bruno, F., Diarte, J., Haggiagi, A. M., Harrison, R. A., et al. (2025) · Neuro-Oncology · doi:10.1093/neuonc/noaf165 · Cited by 7
Sleep quality and its correlates in people with epilepsy: A multicenter cross‐sectional study in Germany
Zöllner, J. P., Mann, C., Willems, L. M., von Podewils, F., Langenbruch, L. M., Bierhansl, L., Knake, S., Menzler, K., Schulz, J., Gaida, B., et al. (2025) · Epilepsia · doi:10.1111/epi.18599 · Cited by 7
“22 The Hospital Anxiety and Depression Scale (HADS) was also administered, a well-established self-report instrument for screening anxiety and depression symptoms with high utility in clinical practice.”
Responsive stimulation of the thalamus for idiopathic generalized epilepsy: Results of the randomized controlled NAUTILUS trial through 18 months
Uysal, U., Landazuri, P., Burdette, D. E., Patra, S., Crudele, A. N., Englot, D. J., Gavvala, J. R., Tandon, N., Pati, S. B. B., Kaye, L. C., et al. (2026) · Epilepsia · doi:10.1002/epi.70321 · Cited by 7
Firefighter With Co-Morbid Psychogenic Non-Epileptic Seizures and Post-Traumatic Stress Disorder Treated With Prolonged Exposure Therapy: Long-Term Follow-Up
Myers, L., Trobliger, R., & Goszulak, S. (2020) · Clinical Case Studies · doi:10.1177/1534650120963181 · Cited by 8
“Bram indicated “very low” levels of perceived quality of life, emotional well-being, and social functioning and a “low” level of cognitive functioning on Quality of Life in Epilepsy-31 inventory (Cramer et al., 1998).”
Background
Moroccan Arabic version of the Quality of Life Inventory in Epilepsy (QOLIE-31): translation, cultural adaptation and psychometric validation
Merrouni, M. A., Idrissi, A. J., Lamkaddem, A., Filankembo Kava, A. C., fakir, S. E., & Souirti, Z. (2021) · Eastern Mediterranean Health Journal · doi:10.26719/2021.27.3.293 · Cited by 7
Resilience and psychosocial factors in adult with epilepsy: A longitudinal study
Tombini, M., Narducci, F., Ricci, L., Sancetta, B. M., Boscarino, M., Quintiliani, L., Lanzone, J., Straffi, M., Lazzaro, V. D., & Assenza, G. (2024) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2024.109746 · Cited by 7
“…the Resilience Scale (RS-14) [15,16] and questionnaires for the assessment of depressive symptoms, anxiety and quality of life: respectively, Beck Depression Inventory-II (BD-II) [17], Generalized Anxiety Disorder-7 (GAD-7) [18] and the Quality of Life in Epilepsy Scale - QOLIE-31 (Q31) [19,20].”
Method
SEIZURE SEVERITY AS AN ALTERNATIVE MEASURE OF OUTCOME IN EPILEPSY
Todorova, K. S., Velikova, V. S., Kaprelyan, A. G., & Tsekov, S. T. (2013) · Journal of IMAB - Annual Proceeding (Scientific Papers) · doi:10.5272/jimab.2013193.433 · Cited by 7
Severity and disability related to epilepsy from the perspective of patients and physicians: A cross-cultural adaptation of the GASE and GAD scales
Duarte, E. P., Correa, C., Marques, B. S., Mendonça, G. S., Braatz, V., Harger, R., FAGUNDES, D. A., Walz, R., Wiebe, S., Lunardi, M. D. S., et al. (2021) · Seizure · doi:10.1016/j.seizure.2021.03.006 · Cited by 7
Postoperative Evaluation of the Quality of Life, Depression, and Anxiety of Temporal Lobe Epilepsy Cohort: A Single Institute Experience in Indonesia
Bakhtiar, Y., Brilliantika, S. P., Bunyamin, J., Arifin, M. T., Hardian, H., Bintoro, A. C., & Muttaqin, Z. (2021) · Frontiers in Neurology · doi:10.3389/fneur.2021.708064 · Cited by 7
“Do I still have epilepsy?” Epilepsy identity 15–20 years after anterior temporal lobectomy
Coleman, H., McIntosh, A. M., & Wilson, S. J. (2021) · Epilepsia · doi:10.1111/epi.17143 · Cited by 7
Perioperative levetiracetam for seizure prophylaxis in seizure-naive brain tumor patients with focus on neurocognitive functioning
Konrath, E., Marhold, F., Kindler, W., Scheichel, F., Popadic, B., Blauensteiner, K., Calabek, B., Freydl, E., Weber, M., Ristl, R., et al. (2022) · BMC Neurology · doi:10.1186/s12883-022-02762-7 · Cited by 7
“Health‐related quality of life (QOLIE31) HRQoL was assessed with the “Quality of Life in Epilepsy” questionnaire (QOLIE31), which consists of seven subscales [41].”
Method
Psychiatric and psychological assessment of Spanish patients with drug-resistant epilepsy and psychogenic nonepileptic seizures (PNES) with no response to previous treatments
Sangrà, P. S., Baillés, E., Carreño, M., Donaire, A., Boget, T., Setoaín, X., Bargalló, N., Rumià, J., Sanchez-Vives, M. V., & Pintor, L. (2023) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2023.109329 · Cited by 7
“The QOLIE-31 is a selfadministered questionnaire that evaluates patients’ life quality over the last 4 weeks.”
Influential
Clinical characteristics, surgical and neuropsychological outcomes in drug resistant tumoral temporal lobe epilepsy
Ravat, S. H., Iyer, V., Muzumdar, D., Shah, U., Pradhan, P., Jain, N., & Godge, Y. (2015) · International Journal of Surgery · doi:10.1016/j.ijsu.2015.10.015 · Cited by 7
Gender differences in seizure recurrence and antiepileptic drug polytherapy predicting health-related quality of life of persons 1 year after diagnosis of epilepsy
Lee, S., Kim, S. J., No, S.-K., Park, H.-K., & Kim, O. J. (2021) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2021.107984 · Cited by 7
Seizure-related injuries in adults: A prospective case-controlled study on risk factors, seizure severity and quality of life
Fischer, B. D. A., & Tedrus, G. M. A. S. (2022) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2022.108849 · Cited by 7
How Can We Enhance the Sense of Self-Efficacy in Epilepsy Individual Responses from 2 Qualitative Case Reports
Michaelis, R., Niedermann, C., & Berger, B. (2017) · Complementary Medicine Research · doi:10.1159/000468986 · Cited by 7
Contributions to the Understanding of the Neural Bases of the Consciousness
Danaila, L., & Lucian, M. (2013) · InTech eBooks · doi:10.5772/52688 · Cited by 6
First epileptic seizure and quality of life – A prospective study
Linka, L., Nephuth, S., Gorny, I., Krause, K., Mross, P. M., Tsalouchidou, P., Zahnert, F., Fuest, S., Menzler, K., Knake, S., et al. (2024) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2024.109704 · Cited by 6
“Questionnaires to examine QoL included the German versions of the SF-36 (Short-Form-36 Health Survey; [6]) and the QOLIE-31 (QoL in Epilepsy Inventory;[7]).”
BackgroundMethod
Association between depressive and anxious symptoms with cognitive function and quality of life in drug-resistant epilepsy
Monteagudo-Gimeno, E., Sánchez, R., Raduà-Castaño, J., Fortea, L., Boget, T., Carreño-Martínez, M., Donaire-Pedraza, A., Bargalló, N., Setoain-Perego, X., Rumià, J., et al. (2023) · Heliyon · doi:10.1016/j.heliyon.2023.e20903 · Cited by 6
“The assessment of QOL was conducted using the Spanish version of the Quality of Life in Epilepsy Inventory-31 ( QOLIE-31), a tool designed to evaluate patients ’ subjective perceptions of their QOL across several facets associated to epilepsy [26,27].”
Method
German questionnaires assessing quality of life and psycho-social status in people with epilepsy: Reliable change and intercorrelations
Hohmann, L., Bien, C. G., Holtkamp, M., & Grewe, P. (2023) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2023.109554 · Cited by 6
Effectiveness of Seizure Dogs for People With Severe Refractory Epilepsy
Wester, V., de Groot, S., Kanters, T. A., Wagner, L., Ardesch, J. J., Brouwer, W. B. F., Ramos, I. C., le Cessie, S., Versteegh, M., van Exel, J. N. A., et al. (2024) · Neurology · doi:10.1212/wnl.0000000000209178 · Cited by 6
“22 Statistical Analysis”
Factors influencing quality of life in extratemporal lobe epilepsy and mesial temporal lobe epilepsy: a cross-sectional study using medical records
Annaka, H., Nomura, T., & Hasegawa, N. (2024) · Frontiers in Neurology · doi:10.3389/fneur.2024.1443903 · Cited by 6
Impact of the socioeconomic crisis in Lebanon on people with epilepsy
Samaha, J. N., Dagher, J. B., & Khaled, K. A. (2024) · Epilepsia Open · doi:10.1002/epi4.13084 · Cited by 6
Brief multidimensional measure of spirituality/religiousness, self-esteem, quality of life, and epilepsy
Tedrus, G. M. A. S., & Marti, G. C. D. C. F. (2022) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2022.108578 · Cited by 6
People with epilepsy have poor life satisfaction and self-rated health: Findings from the United Kingdom
Kang, W. (2023) · Frontiers in Psychology · doi:10.3389/fpsyg.2022.986520 · Cited by 6
“org been applied in clinical settings and formally document patient concerns (Gilliam et al., 1997; Cramer et al., 1998; Martin et al., 2005; Yogarajah and Mula, 2019), much less is known about the relationship of epilepsy and life satisfaction in communitydwelling adults.”
Background
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
Cost‐utility analysis of magnetoencephalography used to inform intracranial electrode placement in patients with drug resistant epilepsy: a model based analysis
Berrigan, P., Bardouille, T., MacLellan, M., Mohamed, I., & Murthy, M. (2016) · Journal of Evaluation in Clinical Practice · doi:10.1111/jep.12567 · Cited by 6
Seizure first aid training for people with epilepsy attending emergency departments and their significant others: the SAFE intervention and feasibility RCT
Noble, A. J., Nevitt, S. J., Holmes, E. A. F., Ridsdale, L., Morgan, M., Smith, C. T., Hughes, D. A., Goodacre, S. W., Marson, A. G., & Snape, D. (2020) · Health Services and Delivery Research · doi:10.3310/hsdr08390 · Cited by 7
Life adjustment after surgical treatment for temporal lobe epilepsy
Salgado, P. C. B., & Cendes, F. (2009) · Journal of Epilepsy and Clinical Neurophysiology · doi:10.1590/s1676-26492009000200005 · Cited by 6
Perampanel effects on seizures and sleep quality in people with epilepsy: A prospective multicenter study
Bergamo, G., Fernandes, M., Maio, S., Pauletto, G., Nilo, A., Arnaldi, D., Puligheddu, M., Urso, L., Barbato, F., Cervellino, A., et al. (2025) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2025.110748 · Cited by 5
Seizure First Aid Training For people with Epilepsy (SAFE) frequently attending emergency departments and their significant others: results of a UK multi-centre randomised controlled pilot trial
Noble, A. J., Snape, D., Nevitt, S. J., Holmes, E. A. F., Morgan, M., Smith, C. T., Hughes, D. A., Buchanan, M., McVicar, J., MacCallum, E., et al. (2020) · BMJ Open · doi:10.1136/bmjopen-2019-035516 · Cited by 5
Understanding long‐term changes in patient identity 15–20 years after surgery for temporal lobe epilepsy
Coleman, H., McIntosh, A. M., Rayner, G., & Wilson, S. J. (2021) · Epilepsia · doi:10.1111/epi.17027 · Cited by 5

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.
ORCID: Cramer, Joyce A.
Perrine, Kenneth
Devinsky, Orrin
Meador, Kimford
Hermann, Bruce
Venue: Epilepsia
Publisher: Wiley
Published: 1998-01
Volume: 39
Issue: 1
Pages: 81-88
ISSN: 0013-9580 (ISSN-L)
1528-1167
DOI: 10.1111/j.1528-1157.1998.tb01278.x
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
Licence: onlinelibrary.wiley.com/termsAndConditions#vor (vor, 2771 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-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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Development and cross-cultural translations of a 31-item quality of life in epilepsy inventory

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