Article

This paper discusses how to evaluate whether, and in what ways, treatments affect
the lives of children with neurological conditions and their families. We argue
that professionals should incorporate perspectives from patients and families to
help them make decisions about what 'outcomes' are important, and we discuss how
those outcomes might be assessed. A case vignette illustrates the differences and
complementarity between the perspectives of clinicians and those of children and
their parents. We recommend methods for expanding the range of relevant health
outcomes in child neurology to include those that reflect the ways patients and
families view their conditions and our interventions. We explore the added value
of a 'non-categorical' approach to the choice of outcomes. The International
Classification of Functioning, Disability and Health is a useful biopsychosocial
framework to 'rule in' relevant aspects of child and family issues to create a
dynamic system of possible influences on outcomes. We examine the meaning of
'health', 'health-related quality of life', and 'quality of life' as related but
conceptually distinct outcomes. Specific issues are discussed about the
construction, validation, and appraisal of outcome measures, as well as practical
recommendations on how to select outcome measures in the clinical setting and
research.
CI - (c) The Authors. Developmental Medicine & Child Neurology (c) 2011 Mac Keith
Press.

Langue : ANGLAIS