Parent as proxy reporting: implications and recommendations for quality of life research

Improved disease management in children has resulted in an increased interest in the quality of life in children. Quality of life research in children may enlist either the substitute or complementary perspective. Much of the quality of life literature has been guided by the substitute perspective, which infers that parents may best report their child's quality of life. However, the complementary perspective values both parent and child perspectives equally. The purpose of this article was to critically review the quality of life literature with respect to children with diabetes. Limitations in the literature were addressed as conceptual and methodological, demographic, and underlying proxy perspectives. Benefits and limitations of quality of life measurements and perspectives were also discussed. Recommendations and future implications for quality of life research in children extend current understanding from both substitute and complementary perspectives.