Qol Framework

Improvement in QOL among cancer survivors has been a goal of cancer management for years. While mortality rate has been the primary focus, once survival is more likely the QOL of those with cancer becomes more of a concern. The notion of QOL directs attention to the "complete social and psychological being: the individual's performance of social roles, mental acuity, emotional state, sense of well-being and relationships with others."10 Quality of life has been defined as the difference, or the gap, at a particular period of time between the hopes and expectations of the person and one's present life experiences.11,12 In other words, the concept encompasses not only the person's objective state, but also the extent to which that objective state and the person's expectations and hopes are congruent. Without the person's assessment of the meaning of his current situation, there is no way of calibrating the experience. Two people may have exactly the same objective state of health, but their QOL may be perceived as being quite different.

Quality of life is dynamic and changes over time. It is modified by age and experience. Older people adjust their perception about their QOL, whereas younger people may hold higher expectations concerning their physical and functional status. The finding that ratings of QOL tend to be better in older compared to younger people supports this observation.13,14

The concept of QOL is not unidimensional, but instead covers a number of life domains. For each domain, QOL may be perceived differently and be differentially weighted. Changes in one domain can influence perceptions in other domains. Thus, disruption in the physical domain is likely to affect the individual's psychological or social well-being. While many 12-14 different domains have been described10 most generally QOL is defined as including physical, psychological, social, and spiritual domains.15-17 It is generally considered that QOL is best defined and measured from the individual's perspective.

In measuring the perceived QOL of cancer survivors, Ferrell and colleagues present a model that includes four domains—physical, social, psychological, and spiritual.15,18 We use Ferrell and colleagues model as the framework for discussion in this chapter. The four QOL domains are defined as follows.

• Physical well-being is the control or relief of symptoms and the maintenance of function and independence.

• Psychological well-being is the attempt to maintain a sense of control in the face of life-threatening illness characterized by emotional distress, altered life priorities, and fear of the unknown as well as positive life changes.

• Social well-being is the effort to deal with the impact of cancer on individuals, their roles, and relationships.

• Spiritual well-being is the ability to maintain hope and derive meaning from the cancer experience which is characterized by uncertainty.

While a separate chapter will be devoted to the measurement of QOL and some newer approaches in measurement, we provide a brief overview of measurement to place our research in perspective. Early studies of QOL focused on psychological measures of outcomes that were developed for individuals with acute and persistent mental illness.19 Since then, more global measures of QOL have been developed.16,17,20-22 The need to measure not only the problems resulting from a cancer diagnosis but also the positive benefits ofsurviving a life-threatening diagnosis and treatment has also been put forward.23

The recent and cancer-specific measures of QOL have been designed for adult populations.16,17,20 Quality of life measures were originally designed for clinical trials in the United States (e.g., Cella and Tulsky designed the FACT while Aaronson and his colleagues designed the EROTC for clinical trials in the European Community). While cancer survivors share a common experience, irrespective of their background or diagnosis, there are also aspects ofthe experience that are uniquely related to their specific cancer and its treatment. Most clinical researchers designed their measures by using a general set of indicators plus a set that could be tailored to the specific cancer site (e.g., breast, prostate, colorectal), yet sufficiently parsimonious for use in clinical trials. However, many of the studies reviewed in this chapter used the Medical Outcomes Study, ShortForm (SF)-36 or SF-12,24,25 amore general measure of health-related QOL. Typically, they have added items relevant to the specific cancer(s) that were being studied. Quality of life instruments used in each of the articles reviewed are listed in Tables 1-3.

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