Original articlesAssessing Quality of Life in Clinical Research: From Where Have We Come and Where Are We Going?
Section snippets
Historical overview
Over the past two decades there has been a gradual shift away from relying on only clinical and laboratory indicators of illness and a move toward measures that incorporate the patients’ point of view. Researchers have developed a variety of tools that use self-reporting to access one’s own functional performance, health status, and health-related quality of life. The purpose of this article is to describe the history of quality of life assessment, to discuss its current status, and to suggest
Development of measures
Beginning in the early 1970s, researchers focussed on the construction and testing of instruments designed to measure health and HRQL. These generic measures have included both health profiles and patient preference or utility approaches. The profiles provide a description of patient behaviors or feelings on a number of domains. Utility measures, derived from economic or decision theory, reflect the preferences of groups of individuals for specific disease states or outcomes of care [21]. The
Increased Attention to Methodology
The 1980s and 1990s saw an increase in methodological rigor in the development of measures, and increased respect given to information about their psychometric properties. Numerous books and journal articles 34, 35, 36 have outlined appropriate steps in developing and testing new measures. Other publications have reviewed measures highlighting their characteristics and have provided information on patient groups in which they have been used 15, 37, 38, 39. The selection of HRQL measures for use
Conceptualization of Theoretical Models
A number of investigators 76, 77, 78, 79, 80 have previously suggested that some of our research should center on building a conceptual model or theory as a foundation for the construct of HRQL, and to help explain the relationships among is components. In fact, the field has been severely criticized for the lack of science in quality of life research. In 1994, Gill and Feinstein [80] reviewed the use of quality of life measures according to pre set criteria and found that, among other
Conclusion
HRQL is a controversial topic that has been widely discussed and the focus of much development in recent years. Social scientists, economists, clinical researchers, the pharmaceutical industry and, to a lesser extent, clinicians have engaged in lively debate about its meaning, its measurement, and its usefulness as an outcome of health care. Today most would agree that HRQL instruments can supplement information from traditional measures of clinical endpoints and provide a clearer picture of
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