Measuring quality of life in paediatric patients

The purpose of this paper is to highlight important considerations in the m easurement of health-related quality of life (HR-QOL) in paediatric populat ions. Considerations specific to the evaluation of HR-QOL in children inclu de children's understanding of the questions being asked, their understandi ng of their own disease, using parents as proxies, time perception problems and simply the fact that children are continually changing. We provide a review of the currently available literature regarding paediat ric HR-QOL assessments to examine the different instruments and approaches taken to assess HR-QOL in paediatrics. Asthma-specific measures are discuss ed as examples of condition-specific HR-QOL instruments because of the cons iderable amount of methodological and developmental work that has been cond ucted in this disease. Our search strategy revealed 15 main generic and 5 m ain asthma-specific instruments that met our criteria for inclusion. The ma in points highlighted for each instrument are the description of domains, r espondent (i.e. the child, parent or clinician), age group, number of items , format of instrument (usually self-administered or by interview), origina l country and language, and the existence of translations. For the various studies in which the different instruments are used, the issues of patient population tested, sample size, reliability and validity are addressed. Although this paper does not attempt to be an exhaustive study of paediatri c HR-QOL instruments, we provide an overview of the main generic and asthma -specific instruments, as well as an examination of the different methods u sed in assessing paediatric HR-QOL. Many challenges exist in the measuremen t of HR-QOL in paediatric patients. With increased attention to the conside rations highlighted, the field will continue to grow, and the usefulness an d application of HR-QOL measures in paediatric patients is likely to improv e.