Lennox-Gastaut Syndrome (LGS): development of conceptual models of health-related quality of life (HRQL) for caregivers and children

Gallop, Katy, Wild, Diane, Verdian, Lara, Kerr, Michael Patrick, Jacoby, Ann, Baker, Gus, Nixon, Annabel and Cramer, Joyce A. 2010. Lennox-Gastaut Syndrome (LGS): development of conceptual models of health-related quality of life (HRQL) for caregivers and children. Seizure - European Journal of Epilepsy 19 (1) , pp. 23-30. 10.1016/j.seizure.2009.10.007

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Abstract

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.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine MRC Centre for Neuropsychiatric Genetics and Genomics (CNGG)
Subjects:	R Medicine > R Medicine (General) R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
Uncontrolled Keywords:	LGS; Lennox-Gastaut Syndrome; Conceptual model; Caregiver; HRQL; Quality of life
Publisher:	Elsevier
ISSN:	1059-1311
Last Modified:	04 Jun 2017 03:43
URI:	https://orca.cardiff.ac.uk/id/eprint/25530

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