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Patient-Reported Outcomes

5. Setting Boundaries: The Terminology of Patient-Reported Outcomes

The boundaries of concepts and their definition depend upon the measurement objectives, the funding sponsors' motives, the users' particular concerns, and most important of all, the evidence or data on the concept and constructs (Patrick and Bergner, 1990). Investigators may be interested in defining the health of populations to discover or document unmet needs, to determine the effect of medical interventions, or to guide allocation of resources. Traditional measures of morbidity and mortality are limited in defining health status and leave the texture of peoples' lives unexplored.

Example 3

The World Health Organization Quality of Life (WHOQOL) group has defined quality of life as:
“individuals’ perceptions of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns” (The WHOQOL Group, 1994; The WHOQOL Group, 1995; Szabo, 1996).

This definition reflects the growing recognition that quality of life can be inherently subjective, although normative definitions have been proposed that include more objective standards as well as perceptions of objective conditions (Campbell et al., 1976; Calman, 1987).
Quality of life can be used as:

  • A descriptor, i.e., the presence or absence of a characteristic of life;
  • An evaluative statement, i.e., some value is attached to the characteristics of an individual, population, or kind of human life or;
  • A normative or prescriptive statement, i.e., certain norms indicate which characteristics must be present to have a life of quality.

The WHOQOL group places quality of life squarely in the two traditions of an internal psychological and physiological mechanism producing a sense of satisfaction or gratification with life (Hornquist, 1982), and those external conditions that trigger the internal mechanism (Rogerson, 1995). Thus, quality of life is a broad ranging concept that incorporates in a complex way individuals’ physical health, psychological state, level of independence, social relationships, personal beliefs, and their relationships to salient features of the environment (The WHOQOL Group, 1994). The measure is definitely health-related, however, and puts health concerns, not surprisingly for a health organization, in central position of the definition.

WHOQOL Group. (1994). WHOQOL Group, The Development of the World Health Organization Quality of Life Assessment Instrument. In: J. Orley and W. Kuyken, (Eds.) Quality of life assessment: International perspectives, Springer,Berlin (1994), pp. 41–57.
Szabo, S. (1996). On behalf of the WHOQOL Group The world health organization quality of life (WHOQOL) assessment instrument. In Spiker, B. Quality of Life and Phramacoeconomics in Clinical Trails. (2Ed.) Philadelphia: Lippincott-Raven Publishers.
Campbell A., Converse S.E., & Rodgers W.L. (1976). The Quality of American Life. New York : Russell Sage.
Campbell A., Converse S.E., & Rodgers W.L. (1976). The Quality of American Life. New York : Russell Sage.
Calman, K.C. (1987). Definitions and dimensions of quality of life. In Aaronson, N.K. & Beckman, J. (Eds.). The Quality of Life of Cancer Patients. Monograph series of the European Organization for Research on the Treatment of Cancer (EORTC). Vol 17. New York : Raven.
WHOQOL Group. (1994). WHOQOL Group, The Development of the World Health Organization Quality of Life Assessment Instrument. In: J. Orley and W. Kuyken, (Eds.) Quality of life assessment: International perspectives, Springer, Berlin (1994), pp. 41–57.