The development and validation of the Epilepsy and Learning Disabilities Quality of Life (ELDQOL) scale
Open accessAbstract
Few suitable instruments exist for use with people, especially children, with both epilepsy and learning disabilities. One such measure is the Epilepsy and Learning Disabilities Quality of Life scale (ELDQOL), which has recently undergone revision following feedback from relevant users. This article reports on the final psychometric testing phase of this scale. ELDQOL consists of 70 items covering seizure severity, seizure-related injuries, antiepileptic drug side effects, behavior, mood, physical, cognitive, and social functioning, parental concern, communication, overall quality of life, and overall health. Revalidation involved a qualitative phase, to ascertain users' opinions on the wording, coverage, and layout of the questionnaire, and a quantitative phase, to examine internal consistency, test-retest reliability, and validity. There is very good evidence of the reliability and validity of the final version of ELDQOL, making it a promising instrument for assessing quality of life in children/young adults with epilepsy and learning disabilities.
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Studies typically incorporate several validated questionnaires to assess different aspects of HRQOL, such as the Epilepsy & Learning Disability Quality of Life Questionnaire, the Impact of Pediatric Epilepsy Scale, the Pediatric Quality of Life Inventory, the Parental Stress Index and the Strength and Difficulties Questionnaire.
“Studies typically incorporate several validated questionnaires to assess different aspects of HRQOL, such as the Epilepsy & Learning Disability Quality of Life Questionnaire 220 , the Impact of Pediatric Epilepsy Scale 221 , the Pediatric Quality of Life Inventory 222 , the Parental Stress Index 223 and the Strength and Difficulties Questionnaire 224 .”
From Developmental and epileptic encephalopathies (2024) · cites this paper as [220]
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Developmental and epileptic encephalopathies
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- Authors
- Buck, D., Smith, M., Appleton, R., Baker, G. A., & Jacoby, A.
- Affiliations
- Newcastle University (GB)
- Alder Hey Children's Hospital (GB)
- Walton Centre (GB)
- University of Liverpool (GB)
- Corresponding author
- Jacoby, Ann
- Venue
- Epilepsy & Behavior
- Publisher
- Elsevier BV
- Published
- 2007-02
- Volume
- 10
- Issue
- 1
- Pages
- 38-43
- ISSN
- 1525-5050 (ISSN-L)
- OpenAlex
- W2127095924
- Cited by
- 55
- References
- 15
- Citations by year
- 2026: 1 · 2025: 2 · 2024: 3 · 2023: 4 · 2022: 8 · 2021: 2 · 2020: 3 · 2019: 2 · 2018: 3 · 2017: 3 · 2016: 4 · 2015: 5 · 2014: 3 · 2013: 1 · 2012: 2
- FWCI
- 0.43
- Type
- journal article
- Language
- en
- Open access
- green
- doi.org
- Locations
- Epilepsy & Behavior (publishedVersion)
- PubMed (publishedVersion)
- Research Explorer (The University of Manchester) (submittedVersion)
- Newcastle University ePrints (Newcastle Univesity)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Epilepsy research and treatment
- Social Sciences › Education › Health Education and Validation
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Keywords
- quality of life, epilepsy, learning disabilities, children and young adults, psychometric validation, questionnaire development, internal consistency, test-retest reliability, antiepileptic drug adverse effects, seizure-related injury, parental concerns
- MeSH terms
- Adolescent, Adult, Child, Child, Preschool, Epilepsy, Female, Humans, Infant, Learning Disabilities, Male, Parent-Child Relations, Psychometrics, Quality of Life, Surveys and Questionnaires, Severity of Illness Index, Reproducibility of Results
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