Perspectives on Research Outcome Severity for Critically Ill Newborns

Outcome measures are ways we tell how well babies are doing in the hospital or after going home. Outcome measures used in research may not be the best. One reason is that medications, devices, or care practices can affect many different organ systems, so it is important evaluate more than one area. Another is deciding whether to measure outcomes while the infant is still in the hospital or to wait see how the infant is doing after going home. That decision is complex; one consideration is that some families cannot be reached after going home and their valuable information is lost. Finally, researchers and doctors often view outcomes differently than families. While it is important researchers and doctors make sure outcomes are valid and medically relevant, it is just as important to understand parents' and caregivers' opinions on outcome measures.