Affiliations: Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada
Note: [] Address for correspondence: Gabriel M. Ronen, Department of Pediatrics (Neurology), McMaster University, 1280 Main St. West HSC 3A, Hamilton, ON Canada, L8S 4K1. Tel.: +1 905 521 2100 ext. 75686; Fax: +1 905 521 7914; E-mail: [email protected].
Abstract: Health-care providers have increasingly come to realize that, in terms of the influences on the daily lives and long-term outcomes of individuals with epilepsies, people’s perceptions of their conditions, and a host of related social factors, are as important as the biomedical conditions themselves. The aim of this review is to provide clinicians with up-to-date information about life quality outcomes, the relevant concepts of quality of life, health-related quality of life and health status, as well as methodological underpinning that reflect the complexity of life issues of children and youth with epilepsies and the lives of their families. This review adopts the World Health Organization and others’ definitions of these concepts. We also review the issues of health status and health-related quality of life found in children and youth with epilepsy. We guide the reader through the various considerations needed to interpret and choose these holistic outcomes measures. A common clinical scenario, familiar to any clinician who looks after children with epilepsies and their families, will set the stage for the discussion that follows.
Keywords: Health-related quality of life, health status, ICF, patient reported outcomes, measurement
