Impact of Lennox-Gastaut Syndrome (LGS) on health-related quality of life (HRQL) of patients and caregivers: literature review.
The aim of this study was to conduct a review of the literature to evaluate the impact of LGS on the HRQL of children with LGS and their caregivers. The literature search revealed that there is limited published research on the impact of LGS on the HRQL of the child or caregiver. LGS has a major physical impact on a child, with a high frequency of seizures, and a high rate of seizure-related injuries. It interferes with all aspects of the child's intellectual and social development. The patient, and also his/her entire family are affected. Caring for a child with LGS is described as a 'burden', with increased anxiety about injury from seizures as well as the strain associated with providing continuous care. Overall, there is a lack of research on LGS, specifically the extent of the impact of LGS on the HRQL of the child and caregiver is under-explored.
Gallop
Katy
K
Oxford Outcomes Ltd, Seacourt Tower, West Way, Oxford, OX2 0JJ, United Kingdom. katy.gallop@oxfordoutcomes.com
Wild
Diane
D
Nixon
Annabel
A
Verdian
Lara
L
Cramer
Joyce A
JA
D001526:Behavioral Symptoms / Q000209:etiology; D017028:Caregivers / Q000191:economics / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D003072:Cognition Disorders / Q000209:etiology; D016206:Databases, Bibliographic / Q000706:statistics & numerical data; D004827:Epilepsy / Q000150:complications / Q000191:economics / Q000523:psychology*; D006304:Health Status; D006801:Humans; D011788:Quality of Life; D012922:Social Change