The Ramifications and Ethical Considerations of Using Proxy Data to Measure Health-Related Quality of Life in Stroke Survivors.

Abstract

Background: Understanding ethics in health care research is necessary to solve moral conflicts that may arise during the research process. Guidelines have been proposed to ensure a standardized ethical approach. However, the use of proxy responses in research involving stroke survivors raises ethical debate due to the vulnerabilities of stroke survivors and the discrepancies observed between proxy and patient perspectives. Aim: This article aims to discuss the ramifications and ethical considerations associated with using proxy responses to examine the health-related quality of life of stroke survivors. Discussion: This article suggests a level of agreement on the ability to use proxy data with stroke survivors but with careful consideration of the nature of the data and how the result will be interpreted. The article also highlights the discrepancies between proxy and patient preferences. Strategies such as employing validated tools, integrating proxy data with patient observations, and providing proxy training are proposed to enhance data reliability. Conclusion: Proxy data serves as a feasible and ethical method to examine the health-related quality of life of stroke survivors when direct patient responses are unavailable. Addressing the discrepancies and ethical concerns through innovative approaches is essential to improve proxy-reported data in research and practice.