ABSTRACT

Many of the studies on health-related quality of life (HRQOL) in children have relied on proxy respondents reporting on their view of the health status and HRQOL of the child. Because parents have the legal obligation to make decisions on behalf of their children, it is clearly important to elicit their views. In addition, very young children may not be capable of providing reliable and valid responses. Furthermore, very sick children may be temporarily incapable of reporting about their HRQOL. There is, however, mixed evidence on the agreement between self-report by patients and reports obtained from proxy respondents. It is often the case that proxy and self-reports agree for relatively objective aspects of health status such as mobility, self-care, and vision. In contrast, disagreements are more common for subjective dimensions of health such as emotion and pain (Herjanic & Reich, 1982). In some settings, the degree of morbidity for such subjective dimensions varies systematically with the viewpoint of the observers (Cartwright, 1957). For example, children often report a greater burden of morbidity than parents, who in turn report more morbidity than nurses, who in turn report more than physicians.