Decision-making process--communicating risk/benefits: is there an ideal technique?

Abstract

During the last decade, there have been major advances in the treatment of early-stage breast cancer. The decisions a patient now must make concerning her treatment are often difficult and complex, e.g., mastectomy versus lumpectomy plus breast radiation therapy, adjuvant chemotherapy and/or hormonal therapy versus no further treatment, regional radiation therapy or no regional radiation therapy. In the past, physicians tended to make decisions for patients with little patient input. More recently, women have indicated the need for more information about their disease and a desire to be involved in decisions about their care (1). Degnar et al. (2) examined the preferences of 1012 women with breast cancer for participation in treatment decision making. Twenty-two percent of the women wanted to select their own cancer treatment (active role), 44% wanted to select their treatment collaboratively with their physician (collaborative role), and 34% wanted to delegate this responsibility to their physician (passive role). Education and age influenced the preferred role in decision making. In general, the patient/physician encounter will involve several stages, including exchange of information between the doctor and the patient, deliberation, and decision making (3). 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 again, information flows mainly in one direction, but the patient alone makes the decision. In between these models is the shared model, in which the doctor and patient share all stages of the decision-making process simultaneously. There is a two-way exchange of information, both doctor and patient reveal treatment preferences, and both agree on the decision to implement. It is the shared model for decision making that provides the foundation for the use of decision aids. Studies have demonstrated that the majority of women with breast cancer and their physicians prefer shared models for decision making (4). Studies have suggested problems with the traditional physician/patient encounter, particularly with the transfer of information and patient involvement in decision making (5,6). Siminoff et al. (5) studied 100 consecutive physician–patient encounters for adjuvant chemotherapy in women with early breast cancer to assess the consultative approach. They observed that the communication pattern, particularly that of the physician, was independent of characteristics of the patient and the severity of her disease. The risks and benefits of treatment were discussed, but the physician exchanged little in the way of specific information, and the impact of treatment on the patient’s lifestyle and emotional state often was not routinely addressed. Not surprisingly, the majority of patients (60%) overestimated their chance of being cured by 20% or more and underestimated the likelihood of severe common side effects by a similar percentage. Although patients were given alternative options, physicians generally recommended one treatment, and this had a definite influence on the patient’s decision. Rimer et al. (6) reviewed 116 consultations regarding adjuvant chemotherapy between physicians and patients. Clinicians, on average, told patients less than 70% of the information relevant to their disease and treatment. On the basis of these considerations, researchers and clinicians have responded by investigating better ways of transferring information to patients and supporting them in decision making. Decision 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” (1). Examples of decision aids are written materials, computer-based programs, video programs, audio-guided workbooks, and decision boards. These methods differ from traditional patient education materials both in that they provide an explicit presentation of different treatment options with the associated benefits and risks and in that the information provided is often tailored to the individual characteristics of the patient and her disease. O’Connor et al. have conducted a systematic review of decision aids in various cancers (1) and other health conditions (7). The results of studies evaluating these decision aids demonstrated that they are acceptable to patients and can improve knowledge and make patients more comfortable but did not appear to have a consistent impact on patient satisfaction. There have been relatively few studies of decision aids in breast cancer. We will review the use of decision aids in women with early breast cancer who are faced with treatment options. We will not consider decision aids for early detection of breast cancer or for communicating risk for prevention.