ArticleEpilepsia2023
Development of a core outcome set for quality of life for adults with drug-resistant epilepsy: A multistakeholder Delphi consensus study.
Article in Epilepsia, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
12 citing papers in PubMed, 1 synthesis or guideline pooled it, 19 citations in OpenAlex.
- Service delivery, behavioural, and self-management interventions for adults with epilepsy.The Cochrane database of systematic reviews · 2025Pooled it
- Methodologies for developing and applying consensus-based recommendations in epilepsy care: A narrative review.Epilepsia · 2026Review
- Single-Port Robotics and the Changing Landscape of Thoracic Surgery.Interdisciplinary cardiovascular and thoracic surgery · 2025Article
- What matters most to people living with epilepsy? A rapid review of qualitative research relating to health outcomes.Epilepsia · 2025Review
- Outcome measures for assessing change in children with hypermobility-associated conditions and chronic lower limb musculoskeletal pain: a Delphi survey of international health professions.Clinical rheumatology · 2025Review
- Communicating a diagnosis of Dravet syndrome to parents/caregivers: An international Delphi consensus.Epilepsia open · 2025Article
- Benzodiazepine rescue medication administration for seizure clusters: Real-world retrospective outcomes.Epilepsia · 2025Article
- Article
- Multi-omics technologies and molecular biomarkers in brain tumor-related epilepsy.CNS neuroscience & therapeutics · 2024Review
- Usage and impact of patient-reported outcomes in epilepsy.Brain and behavior · 2023Article
- Quality of life of children with residual seizures after epileptic resection surgery.Frontiers in neurology · 2022Article
- Patient-reported outcomes in epilepsy: a case study exploring their usage and impact.Global & regional health technology assessmentArticle
Corrections and comments
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Authors and funding
9 authors at 6 institutions in 1 country.
Funding
Abstract
objectiveIn 2017, the American Academy of Neurology (AAN) convened the AAN Quality Measurement Set working group to define the improvement and maintenance of quality of life (QOL) as a key outcome measure in epilepsy clinical practice. A core outcome set (COS), defined as an accepted, standardized set of outcomes that should be minimally measured and reported in an area of health care research and practice, has not previously been defined for QOL in adult epilepsy.
methodsA cross-sectional Delphi consensus study was employed to attain consensus from patients and caregivers on the QOL outcomes that should be minimally measured and reported in epilepsy clinical practice. Candidate items were compiled from QOL scales recommended by the AAN 2017 Quality Measurement Set. Inclusion criteria to participate in the Delphi study were adults with drug-resistant epilepsy diagnosed by a physician, no prior diagnosis of psychogenic nonepileptic seizures or a cognitive and/or developmental disability, or caregivers of patients meeting these criteria.
resultsA total of 109 people satisfied inclusion/exclusion criteria and took part in Delphi Round 1 (patients, n = 95, 87.2%; caregivers, n = 14, 12.8%), and 55 people from Round 1 completed Round 2 (patients, n = 43, 78.2%; caregivers, n = 12, 21.8%). One hundred three people took part in the final consensus round. Consensus was attained by patients/caregivers on a set of 36 outcomes that should minimally be included in the QOL COS. Of these, 32 of the 36 outcomes (88.8%) pertained to areas outside of seizure frequency and severity. SIGNIFICANCE: Using patient-centered Delphi methodology, this study defines the first COS for QOL measurement in clinical practice for adults with drug-resistant epilepsy. This set highlights the diversity of factors beyond seizure frequency and severity that impact QOL in epilepsy.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.