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From Cancer Patient to Cancer Survivor: Lost in Transition
their lives and a sense of wholeness and life purpose after a life-altering experience (Ferrell, 2004). Individuals may reappraise their lives following a diagnosis of cancer and search for a sense of control and meaning. Survivors of cancer, although free of the cancer for which they were treated, may be immobilized by fears of recurrence and have difficulties making life decisions, for example, proceeding with vocational plans or marriage. Existential and spiritual issues may also arise related to concerns about death and dying, having a new orientation to time and future, and changed values and goals. The survivorship experience is dynamic, changing over time, with particular moments of stress being transitions, such as the transition from treatment to long-term follow-up. Cancer survivors face these psychosocial concerns and worries about the physical effects of their treatment across the continuum of cancer care (Ganz, 2000).
Cancer’s effects are not isolated to an individual. Instead, it has an impact on the entire family, and the needs of children, spouses, partners, and other loved ones all need to be considered. Family members routinely provide personal care and emotional support for the duration of the cancer experience. Financial concerns may also arise because family income, insurance status, and employment can all be profoundly affected by cancer (see Chapter 6). Caregivers and family members often require, but do not receive, the respite, health care, psychosocial, and financial assistance they need in meeting the many needs of cancer survivors in their lives.
Quality of life (QOL) is a term used widely to describe an individual’s assessment of his or her own general well-being. There is no one agreed-on conceptual model or definition for health-related QOL, and investigators continue to work on developing ways to measure outcomes that matter to patients (Ganz, 2002a; Zebrack et al., 2003). Central to the concept of QOL, however, is the importance of capturing the perspective of the patient across multiple “domains” or areas of well-being. Standardized, self-administered questionnaires are generally used to assess symptoms and functioning in physical, psychological, social, and spiritual domains (Mandelblatt and Eisenberg, 1995; Cella, 1995; Dow et al., 1996; Montazeri et al., 1996; Ferrell et al., 1997a,b, 1998; Ferrans, 2005).1 An example of a conceptual model of QOL is shown in Figure 3-1.
This chapter reviews what is known about these various dimensions of quality of life for cancer survivors. The recognition of these health effects of
Some QOL instruments are generic in nature and are used in general population studies (e.g., Medical Outcomes Study Short Form 36 or SF-36), while others have been developed specifically for use among cancer patients or survivors (e.g., Cancer Rehabilitation Evaluation System or CARES).