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Patient-Reported Outcomes

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

Health status, functional status, well-being, quality of life, and health-related quality of life are concepts that are often used loosely and interchangeably. There is no consensus and widely adopted definition of quality of life because it is used in different contexts by different people. There is considerable agreement, nonetheless, that the quality of life construct is more comprehensive than health status. Health is only one domain.

Quality of Life

Quality of life includes aspects of the environment that may or may not be affected by health or perceived health. Some widely valued aspects of human existence are not generally defined as health status, such as a safe environment, adequate housing, guaranteed income, and freedom.

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Quality of Life is more than Health

The Intelligence Unit of the widely distributed publication, The Economist, recently developed a new “quality of life” index based on a methodology that links the results of subjective life-satisfaction surveys to the objective determinants of quality of life. Using life-satisfaction surveys as a starting point, the Unit used nine indicators that had a significant influence on life-satisfaction and turned these into an equation that explained more than 80% of the variation in country’s life-satisfaction scores. The main factor was income, but the others things were also important: health, freedom, unemployment, family life, climate, political stability and security, gender equality, and family and community life. Note that health is listed among many other aspects of life. Ireland came out top with the fourth-highest GDP per head in the work in 2005, low unemployment, and political liberties. The U.S. was ranked 13th.

These rankings do not match those for infant mortality or life expectancy, but represent the notion that quality of life is broader than health status.

Health-related quality of life (HRQL)

These global human concerns may adversely affect or be affected by health status. Usually, however, health status measures do not include items relating to income, freedom, and respect. One approach to this boundary problem is to use the term health-related quality of life (HRQL). HRQL is often used to indicate that the measure is concentrated on the health concept and the field of health outcomes but includes perceptions or domains not limited to function. No widely-used, specific definition has emerged of HRQL and thus it is difficult to define or bound even this more limited term.

Most often HRQL is defined as physical, emotional, and social functioning. This equation with functional status can be erroneous and of particular concern to persons with disabilities. Persons with functional limitations may enjoy high quality of life through environmental supports or simply through their own life perspective and evaluation of their needs and desires. Although function may be important to many evaluations of their health, health-related quality of life or quality of life should not be used as synonyms.

Definitions

  • It is widely agreed that the health status concept and its domains and constructs range from negatively valued aspects of life, including death, to the more positively valued aspects such as role function and happiness. Health status is a useful concept in the context of assessing health services and treatment effectiveness.
  • Functional status measures usually refer to limitations in the performance of social roles or activity limitations. The status concept is highly dependent on the perspective of the assessor and the assessed.
  • Well-being measures refer to subjective perceptions, including reports of unpleasant or pleasant sensations and global evaluations of health or subjective status. Symptoms may be included in well-being measures or considered separately. Well-being and quality of life may be distinguished by the level of evaluation, i.e., quality of life contains more global evaluations of life position and perspectives, and well-being contains more domain-specific perspectives such as psychological or physical (Kahneman et al., 1999).
Kahneman D., Diener E., Schwarz N. (Eds). (1999). Well-being: The Foundations of Hedonic Psychology. New York : Russell Sage.