Challenges in child and adolescent quality of life research

Quality of life (QoL) of children and adolescents has only recently received the attention it rightfully deserves. Reviews of the effects of a number of the most common chronic childhood conditions (1) show an enormous diversity of impact and associated needs. Before the introduction of QoL instruments, there was a dearth of appropriate means for comparison across conditions. The foremost advantage of QoL measurements is that they can be used for evaluating core dimensions associated with a life of quality, giving direction and guidance in providing appropriate services. Because it is still in its early stages, research on QoL in children and adolescents has several serious limitations. First, there is poor agreement on the core quality of life dimensions. While many speci c schemas have been proposed, they, in fact, overlap considerably (2). Second, most research on children used proxy reports. We need to make a compelling argument for the use of information obtained from youths themselves. Average correlations between biomedical tests of disease parameters and patient reports of well-being are fairly low, especially in children (3). Therefore, it is not surprising that the ability of physicians and nurses accurately to rate their patients' QoL is limited. Both under-and over-estimation of limitations, pain and psychological impact occur (4). Moreover, we frequently see a discrepancy between ef cacy of a treatment from the provider's and the patient's point of view. Similarly, ratings of behavioural and emotional functioning by youths themselves tend to have a low correlation with ratings by parents, teachers, or mental-health workers (5, 6). Insights such as these have led to the reasoning that QoL is best understood from the perspective of the individual (7, 8). While this is well acknowledged in the eld of adult QoL research, methods to obtain children's and adolescents' views on their QoL are only beginning to be developed. Third, the modus operandi has been to develop setting-or condition-speci c QoL instruments, almost for each separate research project or clinic. This approach has made it virtually impossible to develop a knowledge base on the impact of chronic conditions on children or what are effective and ef cacious interventions or policies for improving their QoL. We need to move towards the adoption of a select few QoL instruments that can be applied generically to summarize information from children and adolescents as well as their parents, caretakers and health providers. Of course, we are interested in …