Lennox-Gastaut syndrome (LGS): development of conceptual models of health-related quality of life (HRQL) for caregivers and children.
LGS is a severe form of childhood epilepsy which is characterized by multiple seizures and cognitive impairment. Semi-structured interviews were conducted with 40 parents of children with LGS in the US, UK, and Italy. Parents were asked to report on their perceptions of the HRQL of their child and also to describe the impact on their own HRQL. Thematic analysis was conducted to develop themes relating to the impact on HRQL. The themes were organized into conceptual models of the impact of LGS on the HRQL of the parent and the child. The models demonstrate the complex relationships between the components of LGS and their impact on HRQL.
Gallop
Katy
K
Oxford Outcomes Ltd., Seacourt Tower, West Way, Oxford OX2 0JJ, United Kingdom. katy.gallop@oxfordoutcomes.com
Wild
Diane
D
Verdian
Lara
L
Kerr
Mike
M
Jacoby
Ann
A
Baker
Gus
G
Nixon
Annabel
A
Cramer
Joyce A
JA
D000293:Adolescent; D000328:Adult; D001526:Behavioral Symptoms / Q000209:etiology; D002648:Child; D002675:Child, Preschool; D003072:Cognition Disorders / Q000150:complications* / Q000523:psychology*; D003431:Cross-Cultural Comparison; D002658:Developmental Disabilities; D004185:Disability Evaluation; D004644:Emotions / Q000502:physiology; D004827:Epilepsy / Q000150:complications* / Q000523:psychology*; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D009043:Motor Activity; D009483:Neuropsychological Tests; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology; D010465:Perception / Q000502:physiology; D011569:Psychiatric Status Rating Scales; D011788:Quality of Life; D012720:Severity of Illness Index; D012959:Socioeconomic Factors; D006113:United Kingdom; D014481:United States; D055815:Young Adult