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From Cancer Patient to Cancer Survivor: Lost in Transition (2005)
National Cancer Policy Board (NCPB)

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. "4 Delivering Cancer Survivorship Care." From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press, 2005.

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From Cancer Patient to Cancer Survivor: Lost in Transition

creasingly important for primary care providers, oncologists, nurses, and other health professionals to be familiar with the process of genetic counseling and testing.

A complete assessment of genetic risk involves much more than genetic testing. American Society of Clinical Oncology (ASCO) guidelines recommend that genetic testing only be offered to selected patients with personal or family histories suggestive of a hereditary syndrome, in the context of pre- and post-test counseling to discuss the risks and benefits of genetic testing and cancer early detection and prevention methods, and only when the test results can be adequately interpreted and will aid in diagnosis or care management (ASCO, 2003).

A recent national survey of physicians indicated that most do not consider themselves qualified to provide genetic counseling to their cancer patients (Table 4D-1) (Freedman et al., 2003). Although nearly a third of U.S. physicians have offered genetic tests or referred patients to be tested, only 8 percent took responsibility for providing pre- and post-test counseling by ordering the tests directly (Wideroff et al., 2003a). Oncologists express more confidence than other physicians in recommending genetic testing (85 percent) and providing counseling (50 percent), however, these estimates suggest that additional education and training in this area is needed for all providers who are likely to encounter cancer survivors in their practices (see Chapter 5).

Individuals with strong family histories of cancer (or who are considered high risk) may be referred to a genetic counselor. Genetic counselors are usually master’s degree-level trained and are certified by the American Board of Genetic Counseling. There are about 1,800 certified genetic counselors in the United States, but only 42 percent provide counseling to cancer patients and their families, and only 16 percent spend more than half their

TABLE 4D-1 Physicians’ Qualifications to Provide Genetic Counseling and Recommend Genetic Testing

Specialty

Percentage Who Feel Qualified to Provide Genetic Counseling

Percentage Who Feel Qualified to Recommend Genetic Testing

Primary care

28.8

40.8

Tertiary care (general surgery, gastroenterology, urology)

30.7

58.2

Oncology

50.0

84.6

SOURCE: Freedman et al. (2003).

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