Validation of a New Quality of Life Measure for Children with Epilepsy
Abstract
Summary: Purpose: There is no adequate measure of health‐related quality of life (HRQOL) specifically for children with epilepsy. The aim of this study was to develop an epilepsy‐specific HRQOL questionnaire for children, covering five domains: physical function, emotional well‐being, cognitive function, social function, and behavior. Second, we aimed to demonstrate the instrument's reliability and validity, and its sensitivity to differences in epilepsy severity. Methods: The subjects were guardians of children with refractory epilepsy, whose syndrome had been defined by using video‐EEG monitoring. Each family completed the developed epilepsy‐specific HRQOL scale for children and two standard, generic measures of HRQOL. Results: The results indicated that each of the scales of the questionnaire had good internal consistency reliability. Furthermore, each scale correlated more highly with theoretically similar scales on established, generic health measures than with theoretically dissimilar scales (construct validity). The sensitivity of the questionnaire to differences in epilepsy severity also was demonstrated. As seizure severity increased, HRQOL subscale scores decreased, independent of age, gender, age of seizure onset, and IQ. Further, there was a negative relation between the number of antiepileptic medications taken and measures of memory and language performance, which was independent of age, gender, age of seizure onset, IQ, and seizure severity. Conclusions: This study demonstrated that the developed HRQOL instrument is a reliable and valid measure and is sensitive to differences in epilepsy. These results indicate that this new instrument may be a viable medical or surgical outcome measure for children with epilepsy.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Health-related quality of life (HRQOL) studies measure the effect of chronic disease on an individual's physical, social and mental well-being.
“Health-related quality of life (HRQOL) studies measure the effect of chronic disease on an individual's physical, social and mental well-being 218 .”
From Developmental and epileptic encephalopathies (2024) · cites this paper as [218]
Cites
Coefficient Alpha and the Internal Structure of Tests
Cronbach, L. J. (1951) · Psychometrika · doi:10.1007/bf02310555 · Cited by 43,931 · see citing works
Convergent and discriminant validation by the multitrait-multimethod matrix.
Campbell, D. T., & Fiske, D. W. (1959) · Psychological Bulletin · doi:10.1037/h0046016 · Cited by 17,116 · see citing works
Psychometric theory (2nd ed.).
Sitgreaves, R. (1979) · Contemporary Psychology · doi:10.1037/018882 · Cited by 14,384 · see citing works
Measuring Health: A Guide to Rating Scales and Questionnaires
McDowell, I., & Newell, C. (1987) · Cited by 4,207 · see citing works
Proposal for Revised Clinical and Electroencephalographic Classification of Epileptic Seizures
(1981) · Epilepsia · doi:10.1111/j.1528-1157.1981.tb06159.x · Cited by 3,433 · see citing works
Quality of life and pharmacoeconomics in clinical trials
Pater, J. L. (1996) · Controlled Clinical Trials · doi:10.1016/s0197-2456(97)82191-5 · Cited by 2,412 · see citing works
Measuring Health: A Guide to Rating Scales and Questionnaires
Anderson, J. C. (1997) · The Journal of Nervous and Mental Disease · doi:10.1097/00005053-199711000-00018 · Cited by 1,534 · see citing works
The development of anxiety: The role of control in the early environment.
Chorpita, B. F., & Barlow, D. H. (1998) · Psychological Bulletin · doi:10.1037/0033-2909.124.1.3 · Cited by 1,382 · see citing works
Eslava‐Cobos, J., & Naririo, D. (1989) · Epilepsia · doi:10.1111/j.1528-1157.1989.tb05291.x · Cited by 1,294 · see citing works
Quality of life of people with epilepsy: a European study
Baker, G. A., Jacoby, A., Buck, D., Stalgis, C., & Monnet, D. (1997) · Epilepsia · doi:10.1111/j.1528-1157.1997.tb01128.x · Cited by 847 · see citing works
Development of the Quality of Life in Epilepsy Inventory
Devinsky, O., Vickrey, B. G., Cramer, J., Perrine, K., Hermann, B., Meador, K., & Hays, R. D. (1995) · Epilepsia · doi:10.1111/j.1528-1157.1995.tb00467.x · Cited by 634 · see citing works
Jacoby, A., Baker, G. A., Steen, N., Potts, P., & Chadwick, D. W. (1996) · Epilepsia · doi:10.1111/j.1528-1157.1996.tb00006.x · Cited by 632 · see citing works
Epilepsy: A Comprehensive Textbook
(1998) · Archives of Neurology · doi:10.1001/archneur.55.10.1373 · Cited by 455 · see citing works
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 330 · see citing works
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 · see citing works
Symptoms of Depression and Anxiety in Pediatric Epilepsy Patients
Ettinger, A. B., Weisbrot, D. M., Nolan, E. E., Gadow, K. D., Vitale, S. A., Andriola, M. R., Lenn, N. J., Novak, G., & Hermann, B. P. (1998) · Epilepsia · doi:10.1111/j.1528-1157.1998.tb01427.x · Cited by 305 · see citing works
Seizure frequency and the health-related quality of life of adults with epilepsy
Leidy, N. K., Elixhauser, A., Vickrey, B. G., Means, E. D., & Willian, M. K. (1999) · Neurology · doi:10.1212/wnl.53.1.162 · Cited by 304 · see citing works
An Objective Method for the Assessment of Psychological and Social Problems Among Epileptics
Dodrill, C. B., Batzel, L. W., Queisser, H. R., & Temkin, N. R. (1980) · Epilepsia · doi:10.1111/j.1528-1157.1980.tb04053.x · Cited by 279 · see citing works
Development of the Quality of Life in Epilepsy Inventory for Adolescents: The QOLIE‐AD‐48
Cramer, J. A., Westbrook, L. E., Devinsky, O., Perrine, K. R., Glassman, M. B., & Camfield, C. (1999) · Epilepsia · doi:10.1111/j.1528-1157.1999.tb00828.x · Cited by 275 · see citing works
Questionnaires: Design and Use
Berdie, D. R., & Anderson, J. F. (1974) · Cited by 259 · see citing works
Adolescents with Active or Inactive Epilepsy or Asthma: A Comparison of Quality of Life
AUSTIN, J. K., Huster, G. A., Dunn, D. W., & Risinger, M. W. (1996) · Epilepsia · doi:10.1111/j.1528-1157.1996.tb00558.x · Cited by 190 · see citing works
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 · see citing works
Baxendale, S., Paesschen, W. V., Thompson, P. J., et al. (1998) · Epilepsia · doi:10.1111/j.1528-1157.1998.tb01353.x · Cited by 150 · see citing works
Gilliam, F. G., Wyllie, E., Kashden, J., Faught, E., Kotagal, P., Bebin, M., Wise, M. S., Comair, Y. G., Morawetz, R. B., & Kuzniecky, R. (1997) · Neurology · doi:10.1212/wnl.48.5.1368 · Cited by 150 · see citing works
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 · see citing works
Hoare, P. G., & Russell, M. (1995) · Developmental Medicine & Child Neurology · doi:10.1111/j.1469-8749.1995.tb15015.x · Cited by 144 · see citing works
Emotional Concomitants of Childhood Epilepsy
MATTHEWS, W. S., Barabas, G., & Ferrari, M. (1982) · Epilepsia · doi:10.1111/j.1528-1157.1982.tb05083.x · Cited by 118 · see citing works
Self-esteem and behavioural adjustment in children with epilepsy and children with diabetes
Hoare, P. G., & Mann, H. (1994) · Journal of Psychosomatic Research · doi:10.1016/0022-3999(94)90073-6 · Cited by 106 · see citing works
Neuropsychological patterns in pediatric epilepsy
Williams, J. E., Griebel, M. L., & Dykman, R. A. (1998) · Seizure · doi:10.1016/s1059-1311(98)80040-x · Cited by 100 · see citing works
D’Amico, G. (1987) · Springer eBooks · doi:10.1007/978-1-4613-2039-5_8 · Cited by 99 · see citing works
Ronen, G. M., Rosenbaum, P., Law, M., & Streiner, D. L. (1999) · Developmental Medicine & Child Neurology · doi:10.1017/s0012162299001176 · Cited by 97 · see citing works
Antiepileptic Drugs, Cognitive Function, and Behavior in Children: Evidence from Recent Studies
Trimble, M. (1990) · Epilepsia · doi:10.1111/j.1528-1157.1990.tb05867.x · Cited by 93 · see citing works
Disability due to restrictions in childhood epilepsy
Carpay, H. A., Vermeulen, J., Stroink, H., FBrouwer, O., Peters, A. C. B., & van Donselaar, C. A. (1997) · Developmental Medicine & Child Neurology · doi:10.1111/j.1469-8749.1997.tb07480.x · Cited by 88 · see citing works
Does Short‐Term Antiepileptic Drug Treatment in Children Result in Cognitive or Behavioral Changes?
Williams, J., Bates, S., Griebel, M. L., Lange, B. M., Mancías, P., Pihoker, C., & Dykman, R. A. (1998) · Epilepsia · doi:10.1111/j.1528-1157.1998.tb01291.x · Cited by 65 · see citing works
DOES ILLNESS FOSTER DEPENDENCY? A STUDY OF EPILEPTIC AND DIABETIC CHILDREN
Hoare, P. G. (1984) · Developmental Medicine & Child Neurology · doi:10.1111/j.1469-8749.1984.tb04401.x · Cited by 58 · see citing works
Carpay, H. A., ARTS, W. F. M., Vermeulen, J., et al. (1996) · Epilepsy Research · doi:10.1016/0920-1211(96)00012-5 · Cited by 58 · see citing works
Dam, M. (1990) · Epilepsia · doi:10.1111/j.1528-1157.1990.tb05866.x · Cited by 57 · see citing works
An Objective Method for the Assessment of Psychosocial Problems in Adolescents with Epilepsy
Batzel, L. W., Dodrill, C. B., Dubinsky, B. L., Ziegler, R. G., Connolly, J. E., Fréeman, R. D., Farwell, J. R., & Vining, E. P. G. (1991) · Epilepsia · doi:10.1111/j.1528-1157.1991.tb05245.x · Cited by 47 · see citing works
Use of a Child Behavior Checklist in the Psychosocial Assessment of Children with Epilepsy
Dorenbaum, D., Cappelli, M., Keene, D., et al. (1985) · Clinical Pediatrics · doi:10.1177/000992288502401106 · Cited by 42 · see citing works
Hughes, J. R. (1986) · Electroencephalography and Clinical Neurophysiology · doi:10.1016/0013-4694(86)90198-7 · Cited by 37 · see citing works
Quality of Life in Children with Well-Controlled Epilepsy
Wildrick, D., Parker-Fisher, S., & Morales, A. (1996) · Journal of Neuroscience Nursing · doi:10.1097/01376517-199606000-00007 · Cited by 37 · see citing works
Behavioral Profile and Social Competence in Temporal Lobe Epilepsy of Adolescence
Apter, A., Aviv, A., Kaminer, Y., et al. (1991) · Journal of the American Academy of Child & Adolescent Psychiatry · doi:10.1097/00004583-199111000-00004 · Cited by 33 · see citing works
Williams, J., Sharp, G. B., Lange, B. M., et al. (1996) · Developmental Neuropsychology · doi:10.1080/87565649609540649 · Cited by 32 · see citing works
Psychopathology and seizure type in children with epilepsy
Whitman, S., Hermann, B. P., Black, R. B., & Chhabria, S. (1982) · Psychological Medicine · doi:10.1017/s003329170004914x · Cited by 32 · see citing works
Psychosocial Problems of the Adolescent Patient with Epilepsy
Richardson, D. W., & Friedman, S. B. (1974) · Clinical Pediatrics · doi:10.1177/000992287401300203 · Cited by 25 · see citing works
Rapp, S., Shumaker, S. A., Smith, T. R., Gibson, P., Berzon, R. A., & Hoffman, R. D. (1998) · Quality of Life Research · doi:10.1023/a:1024942215515 · Cited by 20 · see citing works
Quality of life--a view from the playground.
Brown, S. W. (1994) · PubMed · Cited by 19 · see citing works
Behavior of Children with Seizures Comparison with Norms and Effect of Seizure Type
Aman, M. G., WERRY, J. S., & Turbott, S. H. (1992) · The Journal of Nervous and Mental Disease · doi:10.1097/00005053-199202000-00010 · Cited by 18 · see citing works
Perceptions of control among children with epilepsy
Matthews, W. (1986) · Medical Entomology and Zoology · Cited by 16 · see citing works
Brown, S., & Betts, T. (1994) · Seizure · doi:10.1016/s1059-1311(05)80156-6 · Cited by 14 · see citing works
Rapp, S., Shumaker, S. A., Smith, T. R., Gibson, P., Berzon, R. A., & Hoffman, R. D. (1998) · Quality of Life Research · doi:10.1023/a:1008834710146 · Cited by 14 · see citing works
Quality of life in patients with idiopathic, generalized epilepsy
Petersen, B., Walker, M. L., Runge, U., & Kessler, C. (1998) · Journal of Epilepsy · doi:10.1016/s0896-6974(98)00035-8 · Cited by 13 · see citing works
Statistics in practice. An illustrated guide to SPSS
Renehan, A. G. (1998) · British Journal of Oral and Maxillofacial Surgery · doi:10.1016/s0266-4356(98)90768-9 · Cited by 12 · see citing works
Taylor, D. C. (1987) · Archives of Disease in Childhood · doi:10.1136/adc.62.2.209 · Cited by 12 · see citing works
Social aspects of epilepsy in childhood and adolescence
Buchanan, N. (1988) · Journal of Paediatrics and Child Health · doi:10.1111/j.1440-1754.1988.tb01344.x · Cited by 10 · see citing works
Flagged first, then by citations
Cited by
Sorted by citations
Effect of Cannabidiol on Drop Seizures in the Lennox–Gastaut Syndrome
Devinsky, O., Patel, A. D., Cross, J. H., Villanueva, V., Wirrell, E. C., Privitera, M., Greenwood, S. M., Roberts, C., Checketts, D., VanLandingham, K. E., et al. (2018) · New England Journal of Medicine · doi:10.1056/nejmoa1714631 · Cited by 1,015 · see citing works
Validation of the Quality of Life in Childhood Epilepsy Questionnaire in American epilepsy patients
Sabaz, M., Lawson, J. A., Cairns, D. R., Duchowny, M. S., Resnick, T. J., Dean, P. M., & Bye, A. M. E. (2003) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2003.08.012 · Cited by 136 · see citing works
Self-citationDevelopmental and epileptic encephalopathies
Scheffer, I. E., Zuberi, S., Mefford, H. C., Guerrini, R., & McTague, A. (2024) · Nature Reviews Disease Primers · doi:10.1038/s41572-024-00546-6 · Cited by 128 · see citing works
Nabbout, R., Auvin, S., Chiron, C., Irwin, J., Mistry, A., Bonner, N., Williamson, N., & Bennett, B. (2018) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2017.08.029 · Cited by 80 · see citing works
- Authors
- Sabaz, M., Cairns, D. R., Lawson, J. A., Nheu, N., Bleasel, A. F., & Bye, A. M. E.
- Affiliations
- UNSW Sydney (AU)
- Macquarie University (AU)
- Children's Hospital at Westmead (AU)
- Corresponding author
- Bye, Ann M.E.
- Venue
- Epilepsia
- Publisher
- Wiley
- Published
- 2000-06
- Volume
- 41
- Issue
- 6
- Pages
- 765-774
- ISSN
- 0013-9580 (ISSN-L)
- 1528-1167
- OpenAlex
- W2007329098
- Cited by
- 213
- References
- 56
- Citations by year
- 2026: 3 · 2025: 8 · 2024: 4 · 2023: 6 · 2022: 8 · 2021: 5 · 2020: 17 · 2019: 7 · 2018: 13 · 2017: 9 · 2016: 11 · 2015: 8 · 2014: 8 · 2013: 8 · 2012: 9
- FWCI
- 3.95
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Epilepsia (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Epilepsy research and treatment
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Keywords
- health-related quality of life, pediatric epilepsy, drug-resistant epilepsy, questionnaire validation, construct validity, internal consistency, seizure severity, cognitive function, emotional well-being, social function, outcome measures
- MeSH terms
- Age Factors, Child, Epilepsy, Health Status Indicators, Humans, Parents, Psychometrics, Quality of Life, Surveys and Questionnaires, Sensitivity and Specificity, Severity of Illness Index, Reproducibility of Results
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
