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

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,...

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Bibliographic Details
Published in:Epilepsia (Copenhagen) Vol. 65; no. 5; pp. 1224 - 1239
Main Authors: Cross, J. Helen, Benítez, Arturo, Roth, Jeannine, Andrews, J. Scott, Shah, Drishti, Butcher, Emma, Jones, Aimee, Sullivan, Joseph
Format: Journal Article
Language:English
Published: United States Wiley Subscription Services, Inc 01.05.2024
Subjects:
caregiver burden
Caregiver Burden - psychology
Caregivers
Caregivers - economics
Caregivers - psychology
comorbidities
Comorbidity
Cost of Illness
Drug resistance
Humans
Intellectual disabilities
Intellectual Disability - economics
Intellectual Disability - epidemiology
Intellectual Disability - psychology
Intellectual Disability - therapy
Lennox Gastaut Syndrome
Literature reviews
nonseizure symptoms
Quality of Life
Seizures
Sleep disorders
Social interactions
symptom burden
Systematic review
symptom burden
comorbidities
nonseizure symptoms
caregiver burden
ISSN:0013-9580, 1528-1167, 1528-1167
Online Access:Get full text
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Summary: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.
Bibliography:Affiliations for Jeannine Roth and Emma Butcher were at the indicated institutions at the time the study was conducted.
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ISSN:0013-9580
1528-1167
1528-1167
DOI:10.1111/epi.17932