Research map: Views of caregivers, clinicians, and epilepsy advocacy group representatives on survey instruments used to assess behavior, communication, and quality of life in individuals with Lennox-Gastaut syndrome

Back to the article

Papers in this map

  1. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups · Allison Tong · 2007 · 44097 citations · Cited by this paper
  2. Parental miscarried helping, self-efficacy, and treatment adherence among adolescents and young adults with epilepsy: A mediation model · 2026 · Related
  3. Application of a Multidimensional Caregiver Burden Inventory · Milan Novák · 1989 · 1212 citations · Cited by this paper
  4. Variant-specific response of KCNT1 gain-of-function mutations to quinidine · 2026 · Related
  5. Response Burden and Questionnaire Length: Is Shorter Better? A Review and Meta-analysis · Sindre Rolstad · 2011 · 976 citations · Cited by this paper
  6. Phenotype and genotype of people with epilepsy and GABAA receptor gene variants: Genetic and clinical characterization of six children in China · 2026 · Related
  7. International League Against Epilepsy classification and definition of epilepsy syndromes with onset in childhood: Position paper by the ILAE Task Force on Nosology and Definitions · Nicola Specchio · 2022 · 975 citations · Cited by this paper
  8. Prevalence of epilepsy in Portugal: An epidemiologic population-based study (EPIPORT) · 2026 · Related
  9. Qualitative research and content validity: developing best practices based on science and experience · Meryl I. Brod · 2009 · 972 citations · Cited by this paper
  10. Psychiatric symptoms and quality of life in Saudi individuals with epilepsy receiving perampanel: A cross-sectional comparative study · 2026 · Related
  11. Lennox-Gastaut syndrome: a consensus approach on diagnosis, assessment, management, and trial methodology · Alexis A. Arzimanoglou · 2008 · 492 citations · Cited by this paper
  12. MRI-based machine learning model to distinguish hippocampal sclerosis (HS) ILAE type 1 and no HS gliosis only in medial temporal lobe epilepsy · 2026 · Related
  13. The CDKL5 disorder is an independent clinical entity associated with early-onset encephalopathy · Stephanie Fehr · 2012 · 316 citations · Cited by this paper
  14. Is temporal lobe epilepsy a progressive disease? Insights from a 5-HT1A receptor partial volume correction study · 2026 · Related
  15. Cyclin-Dependent Kinase-Like 5 Deficiency Disorder: Clinical Review · Heather E. Olson · 2019 · 242 citations · Cited by this paper
  16. Long-term risk of major adverse cardiovascular events in patients with epilepsy: Roles of childhood onset and antiseizure medications · 2026 · Related
  17. Definition and natural history of Lennox‐Gastaut syndrome · PETER R. CAMFIELD · 2011 · 241 citations · Cited by this paper
  18. The role of DHH motifs in PRUNE1 gene on ion channels: A new insight into epilepsy pathogenesis · 2026 · Related
  19. Lennox-Gastaut syndrome: a comprehensive review · Ali A. Asadi‐Pooya · 2017 · 214 citations · Cited by this paper
  20. Repetitive transcranial magnetic stimulation for epilepsy: Efficacy and safety · 2026 · Related
  21. Expert Opinion on the Management of Lennox–Gastaut Syndrome: Treatment Algorithms and Practical Considerations · Judith Helen Cross · 2017 · 205 citations · Cited by this paper
  22. Key considerations to reduce or address respondent burden in patient-reported outcome (PRO) data collection · Olalekan Lee Aiyegbusi · 2022 · 193 citations · Cited by this paper
  23. Comorbidities and predictors of health‐related quality of life in Dravet syndrome · Andreas Brunklaus · 2011 · 122 citations · Cited by this paper
  24. Psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) measure · Jenny Anne Downs · 2018 · 106 citations · Cited by this paper
  25. Communication Matrix: A clinical and research assessment tool targeting children with severe communication disorders · Charity Rowland · 2010 · 90 citations · Cited by this paper
  26. Severity Assessment in CDKL5 Deficiency Disorder · Scott Demarest · 2019 · 80 citations · Cited by this paper
  27. Evolution of Lennox‐Gastaut Syndrome: A Long‐Term Longitudinal Study · Kazuichi Yagi · 1996 · 70 citations · Cited by this paper
  28. Lennox-Gastaut Syndrome (LGS): Development of conceptual models of health-related quality of life (HRQL) for caregivers and children · Katy Gallop · 2009 · 66 citations · Cited by this paper
  29. Evolution and course of early life developmental encephalopathic epilepsies: Focus on Lennox‐Gastaut syndrome · Anne T. Berg · 2018 · 66 citations · Cited by this paper
  30. Impact of Lennox-Gastaut Syndrome (LGS) on health-related quality of life (HRQL) of patients and caregivers: Literature review · Katy Gallop · 2009 · 65 citations · Cited by this paper
  31. Exploring quality of life in individuals with a severe developmental and epileptic encephalopathy, CDKL5 Deficiency Disorder · Helen Leonard · 2020 · 54 citations · Cited by this paper
  32. Nonseizure consequences of Dravet syndrome, KCNQ2-DEE, KCNB1-DEE, Lennox–Gastaut syndrome, ESES: A functional framework · Anne T. Berg · 2020 · 51 citations · Cited by this paper
  33. A comprehensive systematic literature review of the burden of illness of Lennox–Gastaut syndrome on patients, caregivers, and society · Judith Helen Cross · 2024 · 39 citations · Cited by this paper
  34. Response Burden: What Is It and What Predicts It? · Ting Yan · 2019 · 34 citations · Cited by this paper
  35. Rare diseases – rare outcomes: Assessing communication abilities for the developmental and epileptic encephalopathies · Anne T. Berg · 2022 · 33 citations · Cited by this paper
  36. Cognitive, adaptive, and behavioral effects of adjunctive rufinamide in Lennox–Gastaut syndrome: A prospective observational clinical study · Francesca Felicia Operto · 2020 · 20 citations · Cited by this paper
  37. A quantitative cross-sectional study of the burden of caring for patients with Lennox-Gastaut syndrome, Dravet syndrome, and tuberous sclerosis complex-associated epilepsy in Japan · Michael LoPresti · 2024 · 17 citations · Cited by this paper
  38. Evaluation of the Aberrant Behavior Checklist for Developmental and Epileptic Encephalopathies · Aaron James Kaat · 2021 · 16 citations · Cited by this paper
  39. The emotional burden of caring for patients with Lennox-Gastaut syndrome, Dravet syndrome, and tuberous sclerosis complex-associated epilepsy: A qualitative study in Japan · Michael LoPresti · 2024 · 14 citations · Cited by this paper

Source: OpenAlex (CC0)