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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Kohout, J., Šiška, J., Beadle‐Brown, J., Čáslava, P., & Truhlářová, Z. (2022) · Journal of Evidence-Based Social Work · doi:10.1080/26408066.2022.2045240 · Cited by 3
Assessment of Quality of Life in Patients With Epilepsy: Perspective From Pakistan
Sahar, N. U., & Chaudry, H. R. (2010) · Journal of Muslim Mental Health · doi:10.1080/15564908.2010.487737 · Cited by 3
Neurobehavior Inventory: Correlation with clinical aspects and quality of life in patients with epilepsy
Tedrus, G. M. A. S., Fonseca, L. C., & Carvalho, R. M. (2013) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2013.05.007 · Cited by 3
Factors affecting stigma of epilepsy
Hassan, W. A., Elserogy, Y., Abdelrahman, A. A., Khalifa, H., Badry, R., & Hussein, H. B. (2017) · Middle East Current Psychiatry · doi:10.1097/01.xme.0000475261.72734.03 · Cited by 3
Translating Phenomenology of Psychogenic Nonepileptic Seizures Into Nosology
Janocko, N. J., Morton, M. L., Groover, O., Teagarden, D. L., Villarreal, H. K., Merchant, S., Ahuruonye, N., Rodríguez, A., Drane, D. L., & Karakis, I. (2021) · The Neurologist · doi:10.1097/nrl.0000000000000378 · Cited by 3
Multicultural Perspectives on the Neuropsychological Assessment and Treatment of Epilepsy
Fletcher‐Janzen, E. (2000) · Critical issues in neuropsychology · doi:10.1007/978-1-4615-4219-3_12 · Cited by 3
Examining dimensional models of psychopathology experienced by adults with intellectual disabilities
Melville, C. A. (2010) · Enlighten: Theses (The University of Glasgow) · Cited by 3
Developing a Conceptual Disease Model of Patient Experiences and Identifying Patient-Reported Clinical Outcome Assessments for Use in Trials of Treatments for Focal Onset Seizures
Oberdhan, D., Bacci, E. D., Hill, J. N., Palsgrove, A. C., & Hareendran, A. (2022) · Neuropsychiatric Disease and Treatment · doi:10.2147/ndt.s354031 · Cited by 2
Is preserved consciousness during seizures associated with quality of life among patients with drug-resistant epilepsy?
Koay, J. M., Sabsevitz, D. S., Ritaccio, A. L., Feyissa, A. M., Tatum, W. O., & Blackmon, K. (2023) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2023.109585 · Cited by 2
An observational time-series study on the behavioral effects of adjunctive artisanal cannabidiol use by adults with treatment resistant epilepsies
Brett, B. A., Conroy, M., Doshi, H., Lowe, M. X., Kalcheff-Korn, S., & Jackson, H. (2024) · BMC Neurology · doi:10.1186/s12883-024-03646-8 · Cited by 4
“The validity and reliability of the original QOLIE-31were demonstrated [16].”
Background
Metacognitive beliefs in epilepsy: What is their contribution to quality of life in the context of anxiety, depression and cognitive functioning?
Puteikis, K., Jasionis, A., & Mameniškienė, R. (2025) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2025.110356 · Cited by 2
Visualizing diagnostic delays in functional/dissociative seizures using the referral odyssey plot: A retrospective cohort study
Konomatsu, K., Kakisaka, Y., Ogawa, M., Fujikawa, M., Ishida, M., Kubota, T., Ukishiro, K., Nakasato, N., Aoki, M., & Jin, K. (2025) · Seizure · doi:10.1016/j.seizure.2025.10.009 · Cited by 2
Impact of gender and side of surgery on cognition, affectivity, and quality of life in patients undergoing temporal lobe epilepsy surgery: a prospective cohort study
Cano‐López, I., Catalán‐Aguilar, J., Hampel, K. G., Lozano‐García, A., Tormos‐Pons, P., González‐Bono, E., & Villanueva, V. (2025) · Biology of Sex Differences · doi:10.1186/s13293-025-00775-8 · Cited by 2
“The Quality of Life in Epilepsy Inventory (QOLIE-31) [35, 36] was used to evaluate QOL (Cronbach’s alpha: 0.92).”
Influential
Replication of an evidence-based epilepsy self-management program in Georgia (USA): The HOBSCOTCH trial
Escoffery, C., Patel, A., Bullinger, K. L., McGee, R. E., Leung, J., Shade, T., Shankar, S., Johnson, E. K., Jobst, B. C., & Kiriakopoulos, E. T. (2025) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2025.110805 · Cited by 2
Recall and Self-Relevance of Emotional Words Predict Subjective Self-Evaluation of Cognition in Patients with MTLE with or without Depressive Symptoms
Preglej, L., Marinković, K., & Hečimović, H. (2021) · Brain Sciences · doi:10.3390/brainsci11111402 · Cited by 2
“In the same session, the MTLE patients completed the QOLIE-31 [50] which contains 31 questions providing self-assessment in seven domains: worries related to seizures, emotional well-being, energy/fatigue, cognitive functioning, medication side effects, social functioning, and the overall quality of life.”
MethodInfluential
Reduction of the Adult Epilepsy Self-Management Measure Instrument (AESMMI)
Escoffery, C., Haardöerfer, R., Bamps, Y. A., McGee, R. E., Geiger, D., Quarells, R. C., Thompson, N. J., Patel, A., Anderson, M., & LaFrance, W. C., Jr. (2022) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2022.108692 · Cited by 2
Investigation on the Influencing Factors Related to Quality of Life of Adult Epilepsy Patients in Wenzhou, China, Based on Structural Equation Model
Sun, H., Chen, L., Chen, K., Li, B., & Wu, Z. (2022) · Journal of Healthcare Engineering · doi:10.1155/2022/4336622 · Cited by 3
“)e American quality of life in epilepsy (QOLIE-31) was used to evaluate the quality of life, which was compiled by Cramer and other experts in 1998 [7].”
Method
Cultural adaptation and psychometric properties of the Patient-weighted Quality of Life in Epilepsy 31 Inventory (QOLIE-31P) in Argentina
Sarudiansky, M., Lanzillotti, A. I., Gerbaudo, M. A., Wolfzun, C., Kochen, S. S., Stivala, E. G., D’Alessio, L., & Korman, G. P. (2023) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2023.109132 · Cited by 2
QUality of life and Economic evaluation after neuroSTimulation for Epilepsy (QUESTE) in adolescents and adults with drug-resistant epilepsy: protocol for a multicentre, prospective observational cohort study in The Netherlands
Smeets, J. J. A. S., Rijkers, K., Ackermans, L. P. C. M., Schijns, O. E. M. G., van Mastrigt, G. A. P. G., Rouhl, R. P. W., Wagner, G. L., van Kuijk, S. M. J., Nelissen, J., van Straaten, E. C. W., et al. (2023) · BMJ Open · doi:10.1136/bmjopen-2023-071575 · Cited by 2
Resective Epilepsy Surgery, QUality of life and Economic evaluation (RESQUE): the change in quality of life after resective epilepsy surgery–protocol for a multicentre, prospective cohort study
Kellenaers, J., Rijkers, K., van Mastrigt, G. A. P. G., Schijns, O. E. M. G., Hoogland, G., Dings, J. T. A., van Kuijk, S. M. J., Vlooswijk, M. C. G., Wagner, L., Idema, S., et al. (2023) · BMJ Open · doi:10.1136/bmjopen-2022-064263 · Cited by 2
Psychiatric Morbidity and its Impact on Quality of Life in Patients with Epilepsy
Malik, Y. K., Mattoo, S. K., Kharbanda, P. S., & Grover, S. (2021) · Journal of Mental Health and Human Behaviour · doi:10.4103/jmhhb.jmhhb_132_21 · Cited by 2
A five-point scale for assessing the quality of life of patients with epilepsy
Vlasov, P. N., Va, K., Жидкова, И. А., Khabibova, А. О., Azhigova, A. M., & Kharkovsky, V. (2024) · Neurology neuropsychiatry Psychosomatics · doi:10.14412/2074-2711-2024-1-71-74 · Cited by 2
Memory compromise at extended delays in people with new‐onset epilepsy
Pugh, R., Vaughan, D. N., Jackson, G. D., Ponsford, J. L., & Tailby, C. (2024) · Epilepsia Open · doi:10.1002/epi4.13022 · Cited by 2
“22 The latter tool was adapted to include experiences of ‘seizure(s) and/ or epilepsy’ in place of ‘epilepsy’ on certain items, and the option of ‘N/A’ for items relating to ASM.”
Method
Development and psychometric evaluation of the epilepsy lifestyle questionnaire
Nadernejad, M., Shamsalinia, A., Ghadimi, R., Saadat, P., Ahangar, A. A., Gharagozli, K., & Ghaffari, F. (2024) · PLoS ONE · doi:10.1371/journal.pone.0298773 · Cited by 2
Quality of Life, Its Determinants, and Psychiatric Comorbidities in Juvenile Myoclonic Epilepsy: A Cross-Sectional Observational Study From North India
Choudhury, C., Sahib, A., Chaudhry, N., Gupta, M., Chandan, S. K., & Laskar, S. (2024) · Cureus · doi:10.7759/cureus.69228 · Cited by 2
“The overall score was the weighted average of all the domains’ scores, which were then converted to 0-100 according to a scoring manual [8].”
Method
Effects of the transtheoretical model-based self-management program on behavioral change in persons with epilepsy: Study protocol for a randomized controlled trial
Li, C., Chen, J., Tan, J., Xiao, Y., Deng, R., & Huang, H. (2024) · PLoS ONE · doi:10.1371/journal.pone.0305547 · Cited by 2
Epilepsy core outcome set for effectiveness trials (EPSET): A systematic review of outcomes measured in registered phase III and IV clinical trials for adults with epilepsy
Mitchell, J., Batchelor, R., Adan, G., Noble, A. J., Williamson, P. R., & Marson, A. G. (2024) · Epilepsy Research · doi:10.1016/j.eplepsyres.2024.107481 · Cited by 2
“The QOLIE-31 or QOLIE-31-P instruments and their social function sub-scale were most frequently used, accounting for 32 studies.”
Influential
Therapy response prediction of focal cortex stimulation based on clinical parameters: a multicentre, non-interventional study protocol
Kalousios, S., Hesser, J., Dümpelmann, M., Baumgartner, C., Hamer, H. M., Hirsch, M., Imbach, L., Kaufmann, E., Kegele, J., Knake, S., et al. (2025) · BMJ Open · doi:10.1136/bmjopen-2024-089903 · Cited by 2
Factors influencing quality of life in patients with temporal lobe epilepsy
Tani, A., & Adali, N. (2025) · Arquivos de Neuro-Psiquiatria · doi:10.1055/s-0045-1802552 · Cited by 2
“29,30 It comprises 31 items assessing 7 domains: Seizure Worry, Overall QoL, Emotional Wellbeing, Energy/Fatigue, Cognitive Functioning, Medication Effects, and Social Functioning.”
Mediating effects of anxiety and depression on the relationship between somatic symptom disorder and quality of life among adults with epilepsy
Ma, X., Shen, S., Xu, J., Yang, R., Li, J., & Zhou, D. (2025) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2025.110432 · Cited by 2
The Economic and societal burden associated with drug-resistant epilepsy in the Netherlands: an AIM@EPILEPSY burden-of-disease study protocol
Elabbasy, D., Evers, S., Majoie, M., Schijns, O. E. M. G., M’Rabet, L., van Kranen-Mastenbroek, V. H. J. M., Eekers, D. B. P., Houben, R. M. A., Hendriks, M., Colon, A., et al. (2025) · BMJ Open · doi:10.1136/bmjopen-2024-095123 · Cited by 2
“P, 25 an epilepsy-specific questionnaire.”
Quality of life among patients with epilepsy in the western region of KSA: A cross-sectional study
Almarwani, B. M., Alahmadi, M. J., Alharbi, S. T., Alrehaili, M. A., Dabi, M. M., Benthami, R. K., & Alsaeedi, S. N. (2025) · Journal of Taibah University Medical Sciences · doi:10.1016/j.jtumed.2025.10.002 · Cited by 2
“19 According to a systematic review and meta-analysis of public awareness and attitudes toward epilepsy in KSA, most prior studies were conducted in the Riyadh and Makkah regions (central and western KSA, respectively), whereas only several were conducted in regions such as Qassim (central), Aseer…”
Idiopathisch generalisierte Epilepsien
von Podewils, F., & Geithner, J. (2015) · Clinical Epileptology · doi:10.1007/s10309-015-0422-6 · Cited by 2
Patients with resistant focal epilepsy: what affects the quality of life?
Firsov, K. V., Грантович, А. М., & Котов, А. С. (2019) · Epilepsy and Paroxysmal Conditions · doi:10.17749/2077-8333.2019.11.3.233-243 · Cited by 2

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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