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
