No pain, no gain? Integrating QoL assessment in paediatrics

The arguments for assessing health-related quality of life (QoL) in children undergoing medical treatment are persuasive. Consideration of QoL places the child at the centre of the assessment, and emphasises the autonomy of the family in decision-making. Over-reliance on physiological indices neglects the important question of how illness or treatment impacts on children’s own ratings of their health or well-being. However, assessment of QoL, especially in paediatrics, has proved challenging, and there remain many questions about whether or not it is possible to measure a concept as subjective as QoL, and indeed what could be gained beyond the traditional assessment of outcomes. Perhaps any new undertaking is inevitably associated with considerable pain. It seems timely to assess whether the anticipated gains (increased awareness of children’s views and improved communication) have been achieved. This is not a comprehensive review of the literature, but where possible, arguments are illustrated from recent publications in Archives of Disease in Childhood.

THE PAINS

The pains involved in instituting QoL measurement alongside clinical assessment have been considerable. There has been much debate about the definition of QoL, approaches to measurement and the merits of generic or disease-specific measures. Furthermore, there have been questions about how far measures can be developed for younger children, given their cognitive and linguistic competence. One solution, to rely on proxy ratings, has not been the panacea it was hoped for. Children and parents do not necessarily agree about the child’s QoL, raising questions about who is the most reliable informant.1

There have also been disappointments, to the extent that findings have not always been as expected. In particular, informal observations that treatments are associated with improved QoL have not been confirmed when formal measures are used. …