Home: Educational Supplement: Appendix

Decision-Making Process–Communicating Risks/Benefits:
Is There an Ideal Technique?

Mark Norman Levine, M.D., and Timothy J. Whelan, M.Sc.

In recent years there have been major advances in the treatment of early-stage breast cancer, but the decisions a patient must make about treatment are often difficult and complex. In the past, physicians tended to make decisions for patients with little input from patients. Various studies, however, have suggested problems in that traditional decisionmaking process, particularly with regard to the transfer of information from the physician to the breast cancer patient (Siminoff, Fetting, Abeloff, 1989).

Many patients have begun seeking more information about their disease and have shown a desire to be actively involved in decisions about their treatment. Researchers and clinicians have responded by investigating ways of transferring information in ways more helpful to patients. Decisionmaking aids have been defined as “interventions designed to help people make specific and deliberative choices among options by providing information on the options and outcomes relevant to the person’s health status” (O’Connor, Fiset, DeGrasse, et al., 1999). Such aids now take the form of printed materials, computer-based programs, video programs, audio-guided workbooks, and decision boards.

In general, the patient/physician relationship involves several stages of exchange of information, deliberation, and decisionmaking (Charles, Whelan, Gafni, 1999). At one extreme is a paternalistic model, where information flows in one direction from the doctor to the patient and the doctor alone makes the decision. At the other extreme is the informed model, where the patient alone makes the decision. The alternative to these models is the shared model, in which the doctor and patient reach agreement together at all stages of the decisionmaking process. There is a two-way exchange of information in which the doctor and patient express treatment preferences, discuss them, and come to agreement on which treatment will be used.

O’Connor and colleagues recently conducted a systematic review of decisionmaking aids in the treatment of various cancers (O’Connor, Fiset, DeGrasse, et al., 1999) and other conditions (O’Connor, Rostom, Fiset, et al., 1999). Studies evaluating these aids have found that they are acceptable to patients and do not impact on patient satisfaction.

There have been relatively few studies of decisionmaking aids for women with early-stage breast cancer. In a trial by Goel and colleagues, women faced with a decision regarding surgery for breast cancer were randomly directed to an information pamphlet or an audio-guided workbook (Goel, Sawka, Thiel, et al., 1998). The study detected no differences in knowledge or decisional conflict between the two groups.

The decision board was initially developed to help women with node-negative breast cancer decide whether or not to receive adjuvant chemotherapy (Levine, Gafni, Markham, et al., 1992). It was found to be both acceptable and helpful in decisionmaking. A cohort study on the use of a decision board by patients deciding whether or not to undergo postlumpectomy radiation found that the process improved patient knowledge and facilitated shared decisionmaking

(Whelan, Levine, Gafni, et al., 1995). In another study, Whelan and colleagues found that the use of a decision board by women deciding between lumpectomy and mastectomy led to a decrease in the lumpectomy rate (Whelan, Levine, Gafni, et al., 1999). Randomized trials are currently ongoing to evaluate the decision board process in deciding on lumpectomy versus mastectomy, and on adjuvant chemotherapy for node-negative and node-positive breast cancer.

In conclusion, both patients and physicians find decision aids helpful, but there have been relatively few studies of their use by patients with early-stage breast cancer. Further research is needed to determine whether decision aids can improve such outcomes as satisfaction, downstream quality of life, and unexplained practice variation. Research is also required to determine whether particular decisionmaking aids are better than others for a particular patient group or for different types of medical intervention.

References

Charles C, Whelan TJ, Gafni A. What do we mean by partnership in making decisions about treatment? BMJ 1999;319:780-2. Abstract.

Goel V, Sawka C, Thiel E, Gort E, O’Connor AM. A randomized trial of a decision aid for breast cancer surgery. Med Decis Making 1998;18:482. Abstract.

Levine MN, Gafni A, Markham B, MacFarlane D. A bedside decision instrument to elicit a patient’s preference concerning adjuvant chemotherapy for breast cancer. Ann Intern Med 1992;117:53-8. Abstract.

O’Connor AM, Rostom A, Fiset V, Tetroe J, Entwhistle V, Llewellyn-Thomas H, et al. Decision aids for patients facing health treatment or screening decision: a systematic review. BMJ 1999;319:731-4. Abstract.

O’Connor AM, Fiset V, DeGrasse C, Graham ID, Evans W, Stacy D, et al. Decision aids for patients considering options affecting cancer outcomes: evidence of efficacy and policy implications. J Natl Cancer Inst Monogr 1999;25:67-80. Abstract.

Siminoff LA, Fetting JH, Abeloff MD. Doctor-patient communication about breast cancer adjuvant therapy. J Clin Oncol 1989;7:1192-200. Abstract.

Whelan TJ, Levine MN, Gafni A, Sanders K, Willan A, Mirsky D, et al. Mastectomy or lumpectomy? Helping women make informed choices. J Clin Oncol 1999;17:1727-35. Abstract.

Whelan TJ, Levine MN, Gafni A, Lukka H, Mohide EA, Patel M, et al. Breast irradiation postlumpectomy: development and evaluation of a decision instrument. J Clin Oncol 1995;13:847-53. Abstract.