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From Cancer Patient to Cancer Survivor: Lost in Transition
history of breast cancer with annual mammography (Hillner et al., 1997; Andersen and Urban, 1998; Schapira et al., 2000; Lash and Silliman, 2001; Geller et al., 2003), for patients with a history of colorectal cancer with colorectal examinations (Cooper et al., 1999, 2000; Elston Lafata et al., 2001, 2005; Knopf et al., 2001; Ellison et al., 2003; Rulyak et al., 2004), and for patients with a history of bladder cancer with cystoscopy (Schrag et al., 2003). When examined, racial/ethnic and income differences usually account for significant variation in surveillance practices. The use of testing for metastatic disease that is not recommneded in guidelines has been found to be commonplace among cancer survivors (Elston Lafata et al., 2005). Adherence to adjuvant tamoxifen therapy among women with breast cancer is not uniformly high, with some studies finding nearly one-fourth of patients at risk for inadequate clinical response because of poor adherence (Demissie et al., 2001; Partridge et al., 2003; Fink et al., 2004). Evidence also suggests that the psychosocial needs of cancer patients are not being addressed. For example, oncologists often underdiagnose depression and fail to refer patients to mental health services (Passik et al., 1998; Fallowfield et al., 2001; Eakin and Strycker, 2001; Ell et al., 2005). Reports of unmet mental health needs because of cost have been reported to be significantly higher among cancer survivors relative to those without such a history (Hewitt and Rowland, 2002).
Optimal survivorship care is characterized by an organized plan for follow-up that is shared with patients so they can take responsibility for their care. There has been little research in the United States on the extent to which such plans are developed or communicated to patients. One Canadian study found that more than a third of cancer survivors surveyed after completion of treatment were not sure which physician was in charge of their cancer follow-up care (Miedema et al., 2003). This study relied on an unrepresentative sample of cancer survivors and so may not be generalizable to the broader population.
Relatively little is known of cancer survivors’ desires and perspectives regarding follow-up. Interviews conducted in England with breast cancer survivors on their views of routine follow-up indicated that women wanted, but were not receiving, continuity of care and an unrushed consultation (Adewuyi-Dalton et al., 1998).
A management model has emerged to guide the redesign of delivery systems and to improve care for individuals with chronic conditions. Six elements of the model are relevant to cancer survivorship care (Improving Chronic Illness Care, 2004):
Mobilize community resources to meet needs of patients.
Create a culture, organization, and mechanisms that promote safe, high-quality care.