A mother of a prematurely born son reviews several quality-of-life research studies that highlight the disparity between self-reported quality of life and physician estimates of quality of life.
Dr Katie Savin joins Ethics Talk to discuss their article, coauthored with Drs Laura Guidry-Grimes and Olivia S. Kates: “What Does Disability Justice Require of Antimicrobial Stewardship?”
A physician defends her position that children should only participate in clinical trials when they have child assent and the parents also have been educated about the purpose of the research when there is no direct benefit to the child.
Physicians should go beyond basic medical diagnosis and treatment to offer support to families about the gamut of social and emotional issues that are involved with caring for a severely disabled child.
A bioethicist argues that two journal articles about quality of life-adjusted years research oversimplifies the issue and do not take into consideration people's abilities to adapt to disability and disease.
A health economics professor believes more research is needed on quality of life-adjusted years to explore the way we describe health states, the elicitation of patient values, and how to develop methods for obtaining informed general population preferences.
Elly A. Stolk, MSc and Floortje E. van Nooten, MSc
Two medical technology researchers argue that patients' own valuations of their health states may result in devaluation of interventions that can help them.