Measuring pediatric patient-reported outcomes: good progress but a long way to go

Excerpt

The pre-Socratic Greek philosopher Protagoras (490 BC–420 BC) made an argument about 2,500 years ago: Man is the measure of all things—of things which are, how they are, and of things which are not, how they are not [1]. This controversial idea is in contrast with a long-standing paradigm claiming that the universe is based on objective matters and outside the human’s subjective influence. Similarly, the use of objective methods such as laboratory tests and diagnostic imaging rather than subjective and self-reported methods to evaluate patient health outcomes has dominated medical sciences for several 100 years. Although clinicians and policy makers have gradually accepted the notions “quality of life (QOL),” “health-related quality of life (HRQOL),” or “patient-reported outcomes (PROs)” as an endpoint in the adult setting, the pediatric setting has lagged behind in considering self-reports in concept initiation, instrument development, and clinical application of PROs. We conventionally believed that children’s self-reported health information is unreliable and together with complex developmental issues, resulted in insufficient attention to and under-utilization of pediatric PRO data. Indeed, children are able to report their health status in an adequate manner [2], and pediatric PRO instruments need to carefully accommodate specific content related to children’s cognitive development as well as reading ability, vocabulary, and language skill. …