The measurement of quality of life in children: Past and future perspectives

Quality of life (QoL) is central to pediatric practice. Where it is possibl e to manage but not cure a disease, it is important to determine how far tr eatment and disease compromise the child's QoL. In this way, informed judgm ents can be made about whether or not treatment is appropriate, and, where there is a choice, which choice might be the best option for the child. In this review, we consider different approaches to measuring child QoL, repor t a methodological review of measures currently available, evaluate the qua lity of these measures, and finally consider the implications for the futur e development and use of QoL measures. Computer searches identified 269 pot entially relevant articles, of which 137 were included in the review. Of th ese, 43 were primarily concerned with the development of a new measure of Q oL, 79 reported subsequent development of these same measures, and 15 used a battery approach to measure QoL. All currently available measures have li mitations (e.g., limited psychometric data, lack of parallel forms for chil dren and proxy raters, and insufficient attention to children's ability to complete paper-and-pencil measures). However, recommendations are made on t he basis of those considered to be most satisfactory. It is essential that attempts be made to use QoL measures in research (e.g., evaluation of clini cal trials and alternative treatments) to gain experience that will guide d evelopment of a second generation of more sophisticated measures. Despite t he practical difficulties identified, measurement of QoL remains of central interest to all those concerned with the well-being of children.