A health outcomes framework for assessing health status and quality of life: enhanced data for decision making

Currently, information to improve health status and quality of life is derived from independently designed data systems that range from population-based health surveys to health records used in managing individual patient care. But there is no coherent strategy for using these data sources in concert across diverse applications. Thus, it is frequently difficult to compare or combine results across studies to provide population-level inferences based on findings from specific subpopulations.

The Health Outcomes Framework is an analytic structure to provide more comprehensive information about the health status and quality-of-life impact of disease and its treatment. This framework consists of three components: (1) a core set of health, lifestyle, and economic questionnaires that collect data from an individual's perspective; (2) applications that range from population to patient care levels; and (3) time. Although health is the outcome of interest, lifestyle behaviors and economic and political factors are important determinants of health, which also need to be studied using standardized procedures; thus, they are included in the core. This article focuses on the nature and application of a core health status and quality-of-life instrument. To be useful across a range of applications, such a core instrument needs to have three conceptual characteristics: (1) a theoretical model that regards health as a continuum of states; (2) domains that represent policy-relevant aspects of impairment, disability, and handicap; and (3) a set of societal preferences for these domains. In addition, the core needs to address three practical concerns: (1) brevity, (2) methods of administration that are suitable for respondents with diverse capabilities, and (3) documentation that is publicly available. These features are discussed using examples from currently available, multi-domain generic instruments, each of which has some, but not all, of the necessary features of the core instrument.

The Health Outcomes Framework is intended to be a cooperative effort. It is proposed that the National Cancer Institute and the Centers for Disease Control and Prevention take leadership roles not only by adopting a core health status and quality-of-life instrument for use in current and future cancer data collection activities but also in encouraging industry and academic investigators to implement this core instrument in their cancer studies. Having a vertically integrated core instrument can lead to more representative data for informing decision making and ultimately for obtaining a more equitable distribution of health.