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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Method
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Self-perceived burden and associated factors in Chinese adult epilepsy patients: A cross-sectional study
Tang, B., Fu, Y., Liu, B., & Yi, Q. (2022) · Frontiers in Neurology · doi:10.3389/fneur.2022.994664 · Cited by 22
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
Patient‐reported outcome of pediatric epilepsy surgery: Social inclusion or exclusion as young adults?
Lach, L., Elliott, I., Giecko, T., Olds, J., Snyder, T. J., McCleary, L., Whiting, S. E., Lowe, A., Nimigon‐Young, J., & Smith, M. L. (2010) · Epilepsia · doi:10.1111/j.1528-1167.2010.02584.x · Cited by 22
“…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
Self-reported symptoms of psychological well-being in young adults who underwent resective epilepsy surgery in childhood
Smith, M. L., Kelly, K. A., Kadis, D. S., Elliott, I., Olds, J., Whiting, S. E., & Snyder, T. J. (2011) · Epilepsia · doi:10.1111/j.1528-1167.2011.03026.x · Cited by 22
“Furthermore, the assessment of emotional well-being was limited, consisting of five items from the Quality of Life in Epilepsy-31 Inventory (QOLIE-31) (Cramer et al., 1998).”
Background
Quality of life of patients with epilepsy living in Kingston, Jamaica
Perue, G. G., Gayle, F., Fraser, R. A., & Ali, A. (2011) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2011.02.019 · Cited by 22
“85 in Cramer and colleagues’ original article [5].”
BackgroundMethodResultInfluential
Psychometric evaluation of the Serbian version of the Quality of Life in Epilepsy Inventory-31 (QOLIE-31)
Martinović, Ž., Milovanović, M., Tošković, O., Jovanović, M., Buder, N., Simonović, P., & Đokić, R. (2010) · Seizure · doi:10.1016/j.seizure.2010.07.012 · Cited by 22
Stigma and quality of life at long-term follow-up after surgery for epilepsy in Uganda
Fletcher, A. M., Sims-Williams, H. J., Wabulya, A., & Boling, W. (2015) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2015.09.002 · Cited by 22
Quality of life, anxiety and depression in adult patients after add-on of levetiracetam and conversion to levetiracetam monotherapy
Hagemann, A., May, T. W., Nieder, E., Witte-Boelt, K., Pohlmann‐Eden, B., Elger, C. E., Tergau, F., Schulze‐Bonhage, A., Straub, H., Arnold, S., et al. (2012) · Epilepsy Research · doi:10.1016/j.eplepsyres.2012.08.005 · Cited by 22
Improved quality of life in patients with partial seizures after conversion to oxcarbazepine monotherapy
Sachdeo, R. C., Gates, J. R., Bazil, C. W., Barkley, G. L., Tatum, W. O., D’Souza, J., & McCague, K. (2006) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2006.04.021 · Cited by 22
Reliability and Validity of the Korean Version of QOLIE-10 in Epilepsy
Lee, S., Yun, S., Lee, B.-I., & Korean QoL in Epilepsy Study Group (2006) · Journal of Clinical Neurology · doi:10.3988/jcn.2006.2.4.238 · Cited by 22
Pharmaceutical care and health related quality of life outcomes over the past 25 years: Have we measured dimensions that really matter?
Mohammed, M. A., Moles, R. J., & Chen, T. F. (2018) · International Journal of Clinical Pharmacy · doi:10.1007/s11096-017-0582-8 · Cited by 22
An information-motivation-behavioral skills model-based intervention for patients with epilepsy
Xu, H., & Wang, J. (2023) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2023.109408 · Cited by 21
“The QOLIE-31 is a widely used questionnaire for assessing the quality of life of PWE [20].”
Effect of low-frequency repetitive transcranial magnetic stimulation on sleep pattern and quality of life in patients with focal epilepsy
Sánchez-Escandón, Ó., Arana-Lechuga, Y., Terán-Pérez, G., Ruíz-Chow, Á. A., González-Robles, R. O., Shkurovich-Bialik, P., Collado-Corona, M. Á., & Velázquez‐Moctezuma, J. (2015) · Sleep Medicine · doi:10.1016/j.sleep.2015.11.022 · Cited by 21
“The results are converted to a scale from 0 to 100 to determine the quality of life; the lower the score is, the lower the quality of life [15].”
Background
Social cognition in epilepsy: State of the art and perspectives
Mirabel, H., Guinet, V., Voltzenlogel, V., Pradier, S., & Hennion, S. (2020) · Revue Neurologique · doi:10.1016/j.neurol.2020.02.010 · Cited by 25
Influence of COVID-19 pandemic on quality of life in patients with epilepsy – Follow-up study
Strizović, S., Vojvodić, N. M., Kovačević, M., Pejović, A. T., Bukumirić, Z., Sokić, D. V., & Ristić, A. J. (2021) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2021.108026 · Cited by 21
Psychiatric comorbidity and quality of life in patients with epilepsy on anti-epileptic monotherapy and polytherapy
Yadav, J., Singh, P., Dabla, S., & Gupta, R. (2021) · Tzu Chi Medical Journal · doi:10.4103/tcmj.tcmj_34_21 · Cited by 21
Feasibility of transcutaneous auricular vagus nerve stimulation in treatment of drug resistant epilepsy: A multicenter prospective study
Sabers, A., Aumüller-Wagner, S., Christensen, L. R., Henning, O. J., Kostov, K. H., Lossius, M. I., Majoie, M., Mertens, A., Nielsen, L., Vonck, K. E. J., et al. (2021) · Epilepsy Research · doi:10.1016/j.eplepsyres.2021.106776 · Cited by 21
Stress phenotypes in epilepsy: impact on cognitive functioning and quality of life
Catalán‐Aguilar, J., González‐Bono, E., Lozano‐García, A., Tormos‐Pons, P., Hampel, K. G., Villanueva, V., & Cano‐López, I. (2023) · Frontiers in Psychology · doi:10.3389/fpsyg.2023.1100101 · Cited by 22
“Quality-of-Life in Epilepsy Inventory (QOLIE-31) (Cramer et al., 1998), in its Spanish version (Torres et al., 1999), was used to assess QOL and includes 31 items distributed in seven scales: seizure worry; overall QOL; emotional wellbeing; energy; cognitive self-rating; medication effects; and social functioning.”
Background
Factors associated with generic and disease-specific quality of life in epilepsy.
Huang, H., Che, C., Liu, C.-Y., Jiang, F., & Xiaohong, M. (2011) · PubMed · doi:10.3967/0895-3988.2011.03.004 · Cited by 21
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
Predictors of health-related and global quality of life among young adults with difficult-to-treat epilepsy and mild intellectual disability
Endermann, M. (2013) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2012.12.002 · Cited by 21
Female sexual function mediates the effects of medication adherence on quality of life in people with epilepsy
Lin, C., Burri, A. V., Fridlund, B., & Pakpour, A. H. (2017) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2016.12.012 · Cited by 21
Effect of carbamazepine and oxcarbazepine on serum neuron-specific enolase in focal seizures: A randomized controlled trial
Maiti, R., Mishra, B. R., Sanyal, S., Mohapatra, D., Parida, S., & Mishra, A. (2017) · Epilepsy Research · doi:10.1016/j.eplepsyres.2017.10.003 · Cited by 21
Identifying the trajectory of social milestones 15‐20 years after epilepsy surgery: Realistic timelines for postsurgical expectations
Coleman, H., McIntosh, A. M., & Wilson, S. J. (2019) · Epilepsia Open · doi:10.1002/epi4.12341 · Cited by 21
Psychogenic nonepileptic seizures: clinical characteristics and outcome
Volbers, B., Walther, K., Kurzbuch, K., Erdmann, L., Gollwitzer, S., Lang, J., Onugoren, M. D., Schwarz, M., Schwab, S., & Hamer, H. M. (2022) · Brain and Behavior · doi:10.1002/brb3.2567 · Cited by 21
“…and accompanying symptoms including loss of urine/feces or tongue bite, quality of life (QoL; assessed using the 10-point Likert scale (QOLIE 31) (Cramer et al., 1998) ranging from 1 to 10), dependence on third parties regarding activity of daily living (ADL), governmental support, performed…”
Method
Determinants of quality of life among people with epilepsy attending a secondary care rural hospita in south India
Ashwin, M., Rakesh, P. S., Pricilla, R. A., Manjunath, K., Jacob, K., & Prasad, J. (2013) · Journal of Neurosciences in Rural Practice · doi:10.4103/0976-3147.116467 · Cited by 21
Psychosocial long-term outcome in patients with psychogenic non-epileptic seizures
Walther, K., Volbers, B., Erdmann, L., Kurzbuch, K., Lang, J., Mueller, T. M., Reindl, C., Schwarz, M., Schwab, S., & Hamer, H. M. (2020) · Seizure · doi:10.1016/j.seizure.2020.09.014 · Cited by 21
Social anxiety is associated with poor quality of life in adults with epilepsy in Northeast China: A cross-sectional study
Lu, Y., Zhong, R., Li, M., Zhao, Q., Zhang, X., Hu, B., & Lin, W. (2021) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2021.107866 · Cited by 20
Feasibility study of microburst VNS therapy in drug-resistant focal and generalized epilepsy
Drees, C. N., Afra, P., Verner, R., Kaye, L. C., Keith, A., Jiang, M., Szaflarski, J. P., Nichol, K. E., McDermott, D., Brown, M., et al. (2024) · Brain stimulation · doi:10.1016/j.brs.2024.03.010 · Cited by 20
“…Questionnaire) • Change from baseline in quality of life (QOLIE-31 or QOLIE-48-AD, dependent on patient age), including assessment of minimally important change (MIC), defined as the clinically significant threshold of QOLIE changes for the QOLIE-31P as established in the literature [26,27].”
Binasal visual field defects are not specific to vigabatrin
González, P., Sills, G. J., Parks, S., Kelly, K., Stephen, L. J., Keating, D., Dutton, G. N., & Brodie, M. J. (2009) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2009.09.003 · Cited by 20
“Median monthly seizure frequency [range] 1 [0–90] 2 [0–750]”
Background
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

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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