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Development of the Quality of Life in Epilepsy Inventory
Abstract
Summary: We developed an instrument to measure health‐related quality of life (HRQOL) in epilepsy. A 99‐item inventory was constructed from the RAND 36‐Item Health Survey (generic core), with 9 additional generic items, 48 epilepsy‐targeted items, and 6 other items concerning attitudes toward epilepsy and self‐esteem. We administered the 99‐item inventory to 304 adults with epilepsy at 25 epilepsy centers. Patients and patient‐designated proxies completed the inventory and were retested 1–91 days later. A multitrait scaling analysis of these data led to retention of 86 items distributed in 17 multiitem scales (Cronbach's alpha ranged from 0.78 to 0.92). Factor analysis of the 17 multiitem scales yielded four underlying dimensions of health: an epilepsy‐targeted dimension, a cognitive factor, mental health, and physical health. Construct validity was supported by significant patient‐proxy correlations for all scales and correlations between neuropsychologic tests and self‐reported emotional and cognitive function (all p values < 0.05). There were significant negative correlations between the four factor scores derived from the HRQOL scales and neurotoxicity, systemic toxicity, and health care utilization (except for the correlation between mental health factor and health care utilization; all p values < 0.05). Patients who were seizure‐free in the preceding year reported better HRQOL for the overall score, three of the four factor scores, and 8 of the 17 scale scores than did patients with a high frequency of seizures. Relative validity analysis showed that the epilepsy‐targeted factor and three of its four component scales were more sensitive to categorization of patients by severity of seizure frequency and type than scales tapping physical health, mental health, or cognitive function. These cross‐sectional data support the reliability and validity of this measure of HRQOL in epilepsy. The addition of an epilepsy‐targeted supplement to the generic core improved the sensitivity to severity of epilepsy. The 86 items included in the field testing were supplemented by three additional items to form the Quality of Life in Epilepsy (QOLIE‐89) inventory.
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“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 [52]
Citations
Cites
Coefficient Alpha and the Internal Structure of Tests
Cronbach, L. J. (1951) · Psychometrika · doi:10.1007/bf02310555 · Cited by 43,931
(1992) · PubMed · Cited by 33,716
The MOS 36-ltem Short-Form Health Survey (SF-36): I. Conceptual Framework and Item Selection
Ware, J. E., & Sherbourne, C. D. (1992) · Medical Care · doi:10.1097/00005650-199206000-00002 · Cited by 30,033
Psychometric theory (2nd ed.).
Sitgreaves, R. (1979) · Contemporary Psychology · doi:10.1037/018882 · Cited by 14,384
The Scree Test For The Number Of Factors
Cattell, R. B. (1966) · Multivariate Behavioral Research · doi:10.1207/s15327906mbr0102_10 · Cited by 13,554
Sherbourne, C. D., & Stewart, A. L. (1991) · Social Science & Medicine · doi:10.1016/0277-9536(91)90150-b · Cited by 6,643
Social Indicators of Well-Being
Andrews, F. M., & Withey, S. B. (1976) · Springer eBooks · doi:10.1007/978-1-4684-2253-5 · Cited by 4,920
The Sickness Impact Profile: Development and Final Revision of a Health Status Measure
Bergner, M., Bobbitt, R. A., Carter, W. B., & Gilson, B. S. (1981) · Medical Care · doi:10.1097/00005650-198108000-00001 · Cited by 4,619
The rand 36‐item health survey 1.0
Hays, R. D., Sherbourne, C. D., & Mazel, R. M. (1993) · Health Economics · doi:10.1002/hec.4730020305 · Cited by 2,971
Self-citationMeasuring Functioning and Well-Being: The Medical Outcomes Study Approach
Stewart, A., & Ware, J. (1992) · doi:10.7249/cb361 · Cited by 2,689
Social Indicators of Well-Being: Americans' Perceptions of Life Quality
Andrews, F. M., & Withey, S. B. (1976) · Medical Entomology and Zoology · Cited by 2,409
Generic and Disease-Specific Measures in Assessing Health Status and Quality of Life
Patrick, D. L., & Deyo, R. A. (1989) · Medical Care · doi:10.1097/00005650-198903001-00018 · Cited by 1,779
Some necessary conditions for common-factor analysis
Guttman, L. (1954) · Psychometrika · doi:10.1007/bf02289162 · Cited by 1,689
Neuropsychological Assessment, 2nd Ed
Fisher, J. M. (1985) · The Journal of Nervous and Mental Disease · doi:10.1097/00005053-198502000-00014 · Cited by 1,587
The Effects of Antihypertensive Therapy on the Quality of Life
Croog, S. H., Levine, S., Testa, M. A., Brown, B. W., Bulpitt, C. J., Jenkins, C. D., Klerman, G. L., & Williams, G. H. (1986) · New England Journal of Medicine · doi:10.1056/nejm198606263142602 · Cited by 1,325
A Short-Form Measure of Loneliness
Hays, R., & DiMatteo, M. R. (1987) · Journal of Personality Assessment · doi:10.1207/s15327752jpa5101_6 · Cited by 1,192
Self-citationMattson, R. H., Cramer, J. A., Collins, J. F., Smith, D. B., Delgado‐Escueta, A. V., Browne, T. R., Williamson, P. D., Treiman, D. M., McNamara, J. O., McCutchen, C. B., et al. (1985) · New England Journal of Medicine · doi:10.1056/nejm198507183130303 · Cited by 1,138
Self-citationSprangers, M. A. G., & Aaronson, N. K. (1992) · Journal of Clinical Epidemiology · doi:10.1016/0895-4356(92)90052-o · Cited by 1,076
PROMAX: A QUICK METHOD FOR ROTATION TO OBLIQUE SIMPLE STRUCTURE
Hendrickson, A. E., & White, P. O. (1964) · British Journal of Statistical Psychology · doi:10.1111/j.2044-8317.1964.tb00244.x · Cited by 1,009
Testing the validity of the Euroqol and comparing it with the SF-36 health survey questionnaire
Brazier, J. E., Jones, N., & Kind, P. (1993) · Quality of Life Research · doi:10.1007/bf00435221 · Cited by 707
Mattson, R. H., Cramer, J. A., & Collins, J. F. (1992) · New England Journal of Medicine · doi:10.1056/nejm199209103271104 · Cited by 685
Self-citationFelt versus enacted stigma: A concept revisited
Jacoby, A. (1994) · Social Science & Medicine · doi:10.1016/0277-9536(94)90396-4 · Cited by 607
Liang, M. H., Larson, M. G., Cullen, K. E., & Schwartz, J. A. (1985) · Arthritis & Rheumatism · doi:10.1002/art.1780280513 · Cited by 587
A Health-Related Quality of Life Instrument for Patients Evaluated for Epilepsy Surgery
Vickrey, B. G., Hays, R. D., Graber, J., Rausch, R., Engel, J., & Brook, R. H. (1992) · Medical Care · doi:10.1097/00005650-199204000-00002 · Cited by 332
Self-citationOutcomes of Add‐on Treatment with Lamotrigine in Partial Epilepsy
Smith, D. F., Baker, G. A., Davies, G., Dewey, M. E., & Chadwick, D. W. (1993) · Epilepsia · doi:10.1111/j.1528-1157.1993.tb02417.x · Cited by 330
The Relationship of Neuropsychological Functioning to Quality of Life in Epilepsy
Perrine, K. R., Hermann, B. P., Meador, K. J., Vickrey, B. G., Cramer, J. A., Hays, R. D., & Devinsky, O. (1995) · Archives of Neurology · doi:10.1001/archneur.1995.00540340089017 · Cited by 315
Self-citationEpilepsy and the quality of everyday life
Jacoby, A. (1992) · Social Science & Medicine · doi:10.1016/0277-9536(92)90193-t · Cited by 305
The Functional Status of Patients
Nelson, E. C., Landgraf, J. M., Hays, R. D., Wasson, J. H., & Kirk, J. W. (1990) · Medical Care · doi:10.1097/00005650-199012000-00001 · Cited by 302
Self-citationHays, R. D., & Hayashi, T. (1990) · Behavior Research Methods, Instruments, & Computers · doi:10.3758/bf03203140 · Cited by 287
Self-citationMontanelli, R. G., & Humphreys, L. G. (1976) · Psychometrika · doi:10.1007/bf02293559 · Cited by 267
Selective memory improvement and impairment in temporal lobectomy for epilepsy
Novelly, R. A., Augustine, E. A., Mattson, R. H., Glaser, G. H., Williamson, P. D., Spencer, D. D., & Spencer, S. S. (1984) · Annals of Neurology · doi:10.1002/ana.410150112 · Cited by 266
On the Reliability of a Weighted Composite
Mosier, C. I. (1943) · Psychometrika · doi:10.1007/bf02288700 · Cited by 261
Anticonvulsant Drugs and Cognitive Function: A Review of the Literature
Trimble, M. (1987) · Epilepsia · doi:10.1111/j.1528-1157.1987.tb05776.x · Cited by 233
Smith, D. B., Mattson, R. H., Cramer, J. A., Collins, J. F., Novelly, R. A., Craft, B. R., & Veterans Administration Epilepsy Cooperative Study Group (1987) · Epilepsia · doi:10.1111/j.1528-1157.1987.tb05778.x · Cited by 224
Self-citationThe initial development of a health-related quality of life model as an outcome measure in epilepsy
Baker, G. A., Smith, D. F., Dewey, M. E., Jacoby, A., & Chadwick, D. W. (1993) · Epilepsy Research · doi:10.1016/0920-1211(93)90041-5 · Cited by 199
Mutchler, J. E., & Burr, J. A. (1991) · Journal of Health and Social Behavior · doi:10.2307/2137102 · Cited by 192
The development of a seizure severity scale as an outcome measure in epilepsy
Baker, G. A., Smith, D. F., Dewey, M. E., Morrow, J., Crawford, P. M., & Chadwick, D. W. (1991) · Epilepsy Research · doi:10.1016/0920-1211(91)90071-m · Cited by 185
The Measurement of Health Status in Clinical Practice
Nelson, E. C., & Berwick, D. M. (1989) · Medical Care · doi:10.1097/00005650-198903001-00007 · Cited by 177
The Effects of Psychological Distress and Psychological Well-Being on Use of Medical Services
Manning, W. G., & Wells, K. B. (1992) · Medical Care · doi:10.1097/00005650-199206000-00007 · Cited by 167
Measuring the impact of epilepsy: the development of a novel scale
Jacoby, A., Baker, G. A., Smith, D. C., Dewey, M. E., & Chadwick, D. W. (1993) · Epilepsy Research · doi:10.1016/0920-1211(93)90042-6 · Cited by 158
The Chalfont Seizure Severity Scale.
Duncan, J. S., & Sander, J. W. A. S. (1991) · Journal of Neurology Neurosurgery & Psychiatry · doi:10.1136/jnnp.54.10.873 · Cited by 150
Quality of life assessments in clinical trials
(1991) · General Pharmacology The Vascular System · doi:10.1016/0306-3623(91)90503-x · Cited by 147
Agreement between self reports and proxy reports of quality of life in epilepsy patients
Hays, R. D., Vickrey, B. G., Hermann, B. P., Perrine, K. R., Cramer, J. A., Meador, K. J., Spritzer, K. L., & Devinsky, O. (1995) · Quality of Life Research · doi:10.1007/bf01833609 · Cited by 146
Self-citationThe Stigma of Epilepsy as a Self‐Concept
Ryan, R. E., Kempner, K., & Emlen, A. C. (1980) · Epilepsia · doi:10.1111/j.1528-1157.1980.tb04091.x · Cited by 143
A method of quantification for the evaluation of antiepileptic drug therapy
Cramer, J. A., Smith, D. B., Mattson, R. H., Escueta, A. V. D., Collins, J. F., VA Epilepsy Cooperative Study Group, Browne, T. R., Crill, W. E., Homan, R. W., Mayersdorf, A., et al. (1983) · Neurology · doi:10.1212/wnl.33.3_suppl_1.26 · Cited by 139
Self-citationNasreddine, Z. S., Loginov, M., Clark, L. N., Lamarche, J. B., Miller, B. L., Lamontagne, A., Zhukareva, V. A., Lee, V. M. ‐., Wilhelmsen, K. C., & Geschwind, D. H. (1999) · Annals of Neurology · doi:10.1002/1531-8249(199906)45:6 · Cited by 135
Psychosocial Dimensions of Epilepsy: A Review of the Literature
Levin, R., Banks, S., & Berg, B. (1988) · Epilepsia · doi:10.1111/j.1528-1157.1988.tb04238.x · Cited by 132
Summary and Discussion of MOS Measures
Stewart, A., Sherbourne, C. D., Hays, R. D., Wells, K. B., Nelson, E. C., KAMBERG, C. J., Rogers, W. H., Berry, S. H., & Ware, J. E. (1992) · Cited by 131
Self-citationHermann, B. P. (1992) · Journal of Epilepsy · doi:10.1016/s0896-6974(05)80134-3 · Cited by 119
Self-citationHooper, S. R., & Willis, W. G. (1989) · Springer eBooks · doi:10.1007/978-1-4613-8810-4_6 · Cited by 113
Epilepsy and Learned Helplessness
Devillis, R. F., DeVellis, B. M., Wallston, B. S., & Wallston, K. A. (1980) · Basic and Applied Social Psychology · doi:10.1207/s15324834basp0103_4 · Cited by 96
Neuropsychological Abilities Before and After 5 Years of Stable Antiepileptic Drug Therapy
Dodrill, C. B., & Wilensky, A. J. (1992) · Epilepsia · doi:10.1111/j.1528-1157.1992.tb02323.x · Cited by 93
BRAIN INJURY, DRUGS, AND ENVIRONMENT AS CAUSES OF MENTAL DECAY IN EPILEPSY
Lennox, W. G. (1942) · American Journal of Psychiatry · doi:10.1176/ajp.99.2.174 · Cited by 85
(1990) · JAMA · doi:10.1001/jama.1990.03450060075033 · Cited by 81
Multitrait-Multimethod Analysis of Health-Related Quality-of-Life Measures
Hadorn, D. C., & Hays, R. D. (1991) · Medical Care · doi:10.1097/00005650-199109000-00004 · Cited by 73
Self-citationEpilepsy: patient perceptions of their condition
Hayden, M., Penna, C., & Buchanan, N. (1992) · Seizure · doi:10.1016/1059-1311(92)90025-v · Cited by 72
A Quantitative Approach to Measuring the Social Effects of Epilepsy
Chaplin, J. E., Yepez, R., Shorvon, S. D., & Floyd, M. (1990) · Neuroepidemiology · doi:10.1159/000110765 · Cited by 68
Socioeconomic Accompaniments of Severe Epilepsy
Thompson, P. J., & Oxley, J. (1988) · Epilepsia · doi:10.1111/j.1528-1157.1988.tb05791.x · Cited by 66
Epidemiology and Genetics of Epilepsy
Annegers, J. F. (1994) · Neurologic Clinics · doi:10.1016/s0733-8619(18)30108-7 · Cited by 59
Reproductive Function in Epilepsy
Cramer, J. A., & Jones, E. E. (1991) · Epilepsia · doi:10.1111/j.1528-1157.1991.tb05887.x · Cited by 53
Self-citationEffectiveness of coping strategies employed by people with chronic epilepsy
Upton, D., & Thompson, P. J. (1992) · Journal of Epilepsy · doi:10.1016/s0896-6974(05)80059-3 · Cited by 45
Hughes, J. R. (1986) · Electroencephalography and Clinical Neurophysiology · doi:10.1016/0013-4694(86)90198-7 · Cited by 37
An Investigation into the Social Construction and Consequences of the Label Epilepsy
West, P. (1979) · The Sociological Review · doi:10.1111/j.1467-954x.1979.tb00357.x · Cited by 37
New Quality‐of‐Life Inventory for Epilepsy Patients: Interim Results
Perrine, K. R. (1993) · Epilepsia · doi:10.1111/j.1528-1157.1993.tb05913.x · Cited by 37
Self-citationTucson, A. Z., Baldwin, M. A., & Talwar, D. (1995) · Pediatric Neurology · doi:10.1016/0887-8994(95)90010-1 · Cited by 36
Sexual Dysfunction in Epilepsy
Morrell, M. (1991) · Epilepsia · doi:10.1111/j.1528-1157.1991.tb05891.x · Cited by 29
Schachter, S. C., Shafer, P. O., & Murphy, W. F. (1993) · Journal of Epilepsy · doi:10.1016/0896-6974(93)90005-u · Cited by 28
Effects of Age on Seizure Susceptibility in Genetically Epilepsy‐Prone Rats (GEPR‐9s)
Thompson, J. L., Carl, F. G., & Holmes, G. L. (1991) · Epilepsia · doi:10.1111/j.1528-1157.1991.tb05239.x · Cited by 27
Interictal cognitive aspects of epilepsy.
Dodrill, C. B. (1992) · PubMed · Cited by 19
Andermann, F., Remillard, G. M., Zifkin, B. G., Trottier, A. G., & Drouin, P. (1988) · Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques · doi:10.1017/s0317167100028079 · Cited by 18
Assessing vocational interests of those with epilepsy.
Rt, F., Trejo, W. R., Temkin, N. R., Clemmons, D. C., & Dodrill, C. B. (1985) · Rehabilitation Psychology · doi:10.1037/h0091016 · Cited by 5
Assessing vocational interests of those with epilepsy.
Fraser, R., & Al, E. (1985) · Rehabilitation Psychology · doi:10.1037//0090-5550.30.1.29 · Cited by 4
Research works printed but not linked: 11
- Chadwick D, 1991, Randomized study of antiepileptic drug withdrawal in patients in remission, Lancer, 337, 1175
- Hermann BP, 1991, Epilepsy and behavior, 23
- Devinsky O, Epilepsy: a comprehensive textbook
- Thompson P, 1991, Living with intractable epilepsy: impact on family members, Epilepsia, 32, 42
- 10.1016/0277-9536(94)90396-4 · DOI
- 10.1016/0920-1211(91)90071-M · DOI
- Vickrey BG, 1993, QOLIE‐89 (version 1.0) scoring manual
- Vickrey BG, 1993, Quality of life and quality of care in epilepsy: update 1993, 27
- Nunnally J, 1978, Psychometric theory
- Shumaker SA, 1990, Quality of life assessments in clinical trials, 95
- 10.1016/0920-1211(93)90041-5 · DOI
Cited by
Sorted by citations
Defining clinically meaningful change in health-related quality of life
Crosby, R. D., Kolotkin, R. L., & Williams, G. R. (2003) · Journal of Clinical Epidemiology · doi:10.1016/s0895-4356(03)00044-1 · Cited by 1,388
“In addition to generic measures of HRQOL, disease-specific measures of HRQOL have been developed for assessing HRQOL in a variety of diseases, including obesity [8–12], arthritis [13–14], diabetes [15–18], asthma [19–21], pulmonary disease [22], cancer [23–26], epilepsy [27], and HIV [28].”
BackgroundEarly Surgical Therapy for Drug-Resistant Temporal Lobe Epilepsy
Engel, J. (2012) · JAMA · doi:10.1001/jama.2012.220 · Cited by 1,237
A health-related quality of life measure for multiple sclerosis
Vickrey, B. G., Hays, R. D., Harooni, R., Myers, L. W., & Ellison, G. W. (1995) · Quality of Life Research · doi:10.1007/bf02260859 · Cited by 1,132
Self-citationStandards for epidemiologic studies and surveillance of epilepsy
Thurman, D. J., Beghi, E., Begley, C. E., Berg, A. T., Buchhalter, J., Ding, D., Hesdorffer, D. C., Hauser, W. A., Kazis, L. E., Kobau, R., et al. (2011) · Epilepsia · doi:10.1111/j.1528-1167.2011.03121.x · Cited by 1,049
Devinsky, O., Vezzani, A., O'Brien, T. J., Jetté, N., Scheffer, I. E., de Curtis, M., & Perucca, P. (2018) · Nature Reviews Disease Primers · doi:10.1038/nrdp.2018.24 · Cited by 998
Self-citation
Metadata
- Authors
- Devinsky, O., Vickrey, B. G., Cramer, J., Perrine, K., Hermann, B., Meador, K., & Hays, R. D.
- Affiliations
- New York University Langone Orthopedic Hospital (US)
- RAND Corporation (US)
- Yale University (US)
- University of Tennessee Health Science Center (US)
- Augusta University (US)
- University of California, Los Angeles (US)
- ORCID
- Venue
- Epilepsia
- Publisher
- Wiley
- Published
- 1995-11
- Volume
- 36
- Issue
- 11
- Pages
- 1089-1104
- ISSN
- 0013-9580 (ISSN-L)
- 1528-1167
- OpenAlex
- W2124800861
- Cited by
- 634
- References
- 73
- Citations by year
- 2026: 16 · 2025: 16 · 2024: 14 · 2023: 11 · 2022: 12 · 2021: 17 · 2020: 17 · 2019: 20 · 2018: 14 · 2017: 21 · 2016: 14 · 2015: 23 · 2014: 32 · 2013: 21 · 2012: 15
- FWCI
- 11.64
- 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-89, instrument development, RAND-36, patient-proxy agreement, construct validity, factor analysis, seizure frequency, epilepsy severity, mental health, cognitive function, physical health, health care utilization, neurotoxicity, self-esteem, attitudes toward epilepsy
- MeSH terms
- Adolescent, Adult, Aged, Attitude to Health, Epilepsy, Factor Analysis, Statistical, Female, Health Status, Humans, Male, Middle Aged, Personality Inventory, Psychometrics, Quality of Life, Self Concept, Severity of Illness Index, Reproducibility of Results, Prevalence
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