دورية أكاديمية
أعرض في EDS

A comprehensive systematic literature review of the burden of illness of Lennox-Gastaut syndrome on patients, caregivers, and society.

التفاصيل البيبلوغرافية
العنوان: A comprehensive systematic literature review of the burden of illness of Lennox-Gastaut syndrome on patients, caregivers, and society.
المؤلفون: Cross JH; University College London National Institute for Health and Care Research Biomedical Research Centre Great Ormond Street Institute of Child Health, London, UK., Benítez A; Takeda Pharmaceutical Company, Cambridge, Massachusetts, USA., Roth J; Takeda Pharmaceuticals International, Zurich, Switzerland., Andrews JS; Takeda Pharmaceutical Company, Cambridge, Massachusetts, USA., Shah D; Takeda Pharmaceutical Company, Cambridge, Massachusetts, USA., Butcher E; Oxford PharmaGenesis, Oxford, UK., Jones A; Oxford PharmaGenesis, Oxford, UK., Sullivan J; Department of Neurology, University of California, San Francisco, San Francisco, California, USA.
المصدر: Epilepsia [Epilepsia] 2024 May; Vol. 65 (5), pp. 1224-1239. Date of Electronic Publication: 2024 Mar 08.
نوع المنشور: Journal Article; Systematic Review; Research Support, Non-U.S. Gov't; Review
اللغة: English
بيانات الدورية: Publisher: Blackwell Science Country of Publication: United States NLM ID: 2983306R Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1528-1167 (Electronic) Linking ISSN: 00139580 NLM ISO Abbreviation: Epilepsia Subsets: MEDLINE
أسماء مطبوعة: Publication: Malden, MA : Blackwell Science
Original Publication: Copenhagen : Munskgaard
مواضيع طبية MeSH: Lennox Gastaut Syndrome* , Cost of Illness* , Caregivers*/psychology , Caregivers*/economics , Quality of Life*, Humans ; Intellectual Disability/economics ; Intellectual Disability/therapy ; Intellectual Disability/epidemiology ; Intellectual Disability/psychology ; Caregiver Burden/psychology
مستخلص: Fully elucidating the burden that Lennox-Gastaut syndrome (LGS) places on individuals with the disease and their caregivers is critical to improving outcomes and quality of life (QoL). This systematic literature review evaluated the global burden of illness of LGS, including clinical symptom burden, care requirements, QoL, comorbidities, caregiver burden, economic burden, and treatment burden (PROSPERO ID: CRD42022317413). MEDLINE, Embase, and the Cochrane Library were searched for articles that met predetermined criteria. After screening 1442 deduplicated articles and supplementary manual searches, 113 articles were included for review. A high clinical symptom burden of LGS was identified, with high seizure frequency and nonseizure symptoms (including developmental delay and intellectual disability) leading to low QoL and substantial care requirements for individuals with LGS, with the latter including daily function assistance for mobility, eating, and toileting. Multiple comorbidities were identified, with intellectual disorders having the highest prevalence. Although based on few studies, a high caregiver burden was also identified, which was associated with physical problems (including fatigue and sleep disturbances), social isolation, poor mental health, and financial difficulties. Most economic analyses focused on the high direct costs of LGS, which arose predominantly from medically treated seizure events, inpatient costs, and medication requirements. Pharmacoresistance was common, and many individuals required polytherapy and treatment changes over time. Few studies focused on the humanistic burden. Quality concerns were noted for sample representativeness, disease and outcome measures, and reporting clarity. In summary, a high burden of LGS on individuals, caregivers, and health care systems was identified, which may be alleviated by reducing the clinical symptom burden. These findings highlight the need for a greater understanding of and better definitions for the broad spectrum of LGS symptoms and development of treatments to alleviate nonseizure symptoms.
(© 2024 The Authors. Epilepsia published by Wiley Periodicals LLC on behalf of International League Against Epilepsy.)
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معلومات مُعتمدة: Takeda Pharmaceutical Company
فهرسة مساهمة: Keywords: caregiver burden; comorbidities; nonseizure symptoms; symptom burden
تواريخ الأحداث: Date Created: 20240308 Date Completed: 20240510 Latest Revision: 20240710
رمز التحديث: 20240711
DOI: 10.1111/epi.17932
PMID: 38456647
قاعدة البيانات: MEDLINE
الوصف
تدمد:1528-1167
DOI:10.1111/epi.17932