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Patient-Reported Outcomes

4. Individualizing Quality of Life Measures

Each person is first and foremost an individual, a somebody, a someone, a soul, a human being. Thus, it is not a large leap to define quality of life as “what the person or patient says it is” (Joyce et al., 1988).

Emphasis on the individual differs from most commonly-known quality of life measures, which reject the idiographic view that one can find comparable cues to what quality of life is between individuals, let alone between groups or cultures. The domains of quality of life in the idiographic view must, instead,  be chosen by the individual himself or herself and then evaluated in relation to the individual’s environment, such that the person and the environment intersect (Joyce et al., 1999).

 

Example 1

A 25 year old athlete is engaged in numerous sports, and does very well. For reasons he finds hard to understand, he finds his life unsatisfying and is generally not very happy. A diving accident results in quadriplegia, leaving him completely dependent. After a month of depression, he finds the meaning in life that had previously eluded him. When asked about his mood, he describes himself as satisfied with his limited life, and overall very happy.

Q: Was his quality of life better before, or after, his accident?
A: If one adopts this perspective strictly, no two measures of quality of life might look the same, as each measure would tap individual experience that may be constrained by the particular environment of the individual or by the moment in time. A scientist who completely rejects the nomothetic ideal of finding a general “law” or “pattern” might well find sympathy with the poem by e.e. cummings. In the end, all individuals have separate identities, physically, emotionally, and spiritually.

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Joyce C.R.B. (1988). Quality of Life: the state of the art in clinical assessment. In: Walker S.W., Rosser R.M. (Eds), QoL: Assessment and Application. (pp.169-179)Lancaster : MPT Press.
Joyce C.R.B., O’Boyle C.A. , McGee H.M. (Eds). (1999). Individual Quality of Life: Approaches to Conceptualization and Assessment. London : Harwood Press.