A growing body of research has identified domains of good end-of-life (EOL) care, but few studies have quantified the values people place on quality of EOL domains and services. The typical approach applied to health care services to measure value requires estimating quality-adjusted life years (QALYs), but circumstances surrounding end of life suggest that QALYs may underestimate the value of EOL interventions. Through the R21 mechanism for exploratory research, the proposed study addresses 3 aims concerning the valuation of EOL care:
Aim 1 : Build and test a modified measurement tool that is appropriate for assessing preferences over domains of EOL care. Investigators will adapt current methods for eliciting preferences in a way that allows EOL care to be valued appropriately and incorporates both physical and emotional domains of EOL care.
Aim 2 : Use this measurement tool to assess the value for EOL care in 2 study cohorts (a general population cohort and a patient cohort) and compare differences in preferences between the 2 groups. Formal guidelines recommend that researchers use a societal (general population) perspective to facilitate comparisons across studies and services. Both societal- and patient-based perspectives are important and serve different functions, the former informing resource allocation decisions and the latter being relevant for individual treatment decisions. Investigators will compare values for the 2 cohorts, controlling for respondent characteristics.
Aim 3 : Conduct a pilot study to explore interactions between EOL domains. However useful it may be to consider the value of domains individually, domains are not independent and interrelationships among domains have implications for estimation procedures. The study will begin to explore simple interactions between domains in a small pilot study and again determine whether interactions differ for the 2 cohorts. This project will provide more robust estimates for the value of EOL services, which can then be compared with other services. By including large general population and patient-derived samples, it will underscore the need to account for both societal and patient values, especially when the 2 are dissimilar. In addition, exploring variability in values for EOL care as a function of respondent characteristics will enable providers to develop EOL care programs that address specific patient needs. Finally, exploring interactions among domains will help researchers better understand how improving (or otherwise changing) 1 domain will impact patients' EOL experiences. ? ? ?
