Choosing Treatment Options

Most consumers do not have the scientific background to evaluate their treatment options, but they can still participate intelligently in decisions about their care. Specifically, they can

  • seek independent second opinions;
  • use information resources such as the patient-oriented version of the NCI's Physician Data Query (PDQ) system, which can be accessed by computer and describes (in nontechnical language) treatment options by type of cancer. Information is also available through telephone services operated by both NCI and the American Cancer Society (ACS) (Murphy et al., 1997);
  • enter systems of care that employ a comprehensive approach to cancer treatment and management. (Programs that emphasize patient education, adherence to evidence-based protocols, and use of multidisciplinary teams of providers have been shown to contribute to greater patient satisfaction and better health outcomes (Wagner et al., 1996); and
  • make use of an array of available consumer-oriented products that enable individuals with cancer to electronically access health educational materials, communicate with their providers and with individuals with cancer, and make more fully informed treatment decisions (CancerDesk, 1999; Gustafson et al., 1993).

Use of Quality Information by Consumers

There is evidence that the available quality information is not viewed by many consumers as relevant to their decision making (Hibbard and Jewett, 1997b). In one national survey, three-quarters of Americans said that they would opt to see a surgeon they know rather than one they do not, even if the alternative had much higher quality ratings. Also, although many Americans perceive great differences in the quality of care among health plans, hospitals, and doctors, relatively few are now using quality data to make health care choices (Kaiser Family Foundation, 1996). In many cases, consumer-oriented information is just not available for all of the decisions that a person with cancer may have to make—selecting a doctor, choosing among treatments, or finding a home health service, rehabilitation program, or hospice. The type of information needed about the quality of cancer care services can vary greatly by individual. The services important to the high-risk patient or person who has not yet been diagnosed are quite different from those important to a long-term cancer survivor.

Barriers to the use of quality information include the complexity of the task of evaluating health care quality, difficulties in understanding such information (e.g., high rates of functional illiteracy, non-English speakers), a lack of familiarity among the public with the workings of the health care system (e.g., most Americans do not understand the concept of managed care) and the way in which the organization of care might influence quality, and importantly, a paucity of user-friendly information (Hibbard et al., 1997b).

If large numbers of consumers do not use quality information directly, decisions at the intermediary level may offer important guidance to consumers (Hibbard et al., 1997c). Having a "thumbs-up" or "thumbs-down" rating from an influential group such as the American Association of Retired Persons (AARP) might be more useful for some consumers than detailed quality report cards. Awareness of quality issues in cancer care will likely increase as cancer advocacy groups

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