Abstract
With the growing amount of chronic and rare diseases in childhood that often require
lifelong treatment, improvement of health-related quality of life is a major goal
in therapy. Therefore, the assessment of health-related quality of life from the patient's
perspective as a relevant outcome parameter in clinical practice gained increased
recognition. Health-related quality of life measures are still rarely applied in the
pediatric practice context, although progress has been made in the development of
instruments that are now ready for implementation. Inclusion of measures in research
and practice is needed to accumulate and critically appraise knowledge about health-related
quality of life to broaden the understanding of the child's health status, impacting
on the whole family. From the perspective of a pediatric surgeon, knowledge about
health-related quality of life of the children and their parents is important since
it might influence treatment decisions and facilitates patient-physician communication.
This article will review the concept of health-related quality of life, its methodological
challenges and the application, and the challenges of health-related quality of life
instruments in pediatric practice and health services research.
Keywords
health-related quality of life - pediatric surgery - pediatrics - patient-reported
outcomes - children
