Measuring and Valuing Health-Related Quality of Life in Children with Terminal and Life-Limiting Illness

Abstract

The concept of quality of life is necessarily vague. The meaning of the term is often dependent on the user and the population or individual under consideration. Many have tried to define it and measure it, though no consensus view on what it means or how it should be assessed has emerged. Often in economic evaluations of healthcare interventions, it is restricted to mean health-related quality of life, though even this leaves a yawning chasm from which significant debate arises. This is no different when researchers turn their attention to measuring and valuing the quality of life of children or those at the end of life. There exist important differences between children and adults that affect the ways in which we must understand and measure health-related quality of life. These include important physical and cognitive differences between children and adults, differences in the types and severity of illnesses that affect children and methodological and ethical issues related to conducting research in children. This chapter provides an overview of the difficulties in measuring and valuing paediatric quality of life, with a particular emphasis on doing so in populations of children with terminal or life-limiting illnesses. It raises a number of questions researchers should ask themselves when deciding how to measure quality of life for the purposes of economic evaluation in children with life-limiting illnesses, in particular, what domains of health should be measured, who should undertake the measurement and using which instrument.