There is growing interest in the medical community about the development and dissemination of health care information to assist patients in making more informed choices. The proponents of this new health care consumerism assume that patients want to be informed about their choices and want to be active partners in making those decisions. Along with global advances in informatics technologies, there has been attention to and development of consumer health care informatics tools. Terms such as informed consent1 and shared decision making2 are becoming increasingly common in the medical literature and are associated with the development of many of these new consumer tools. The number of these decision-aids is increasing, as is the amount of literature evaluating their use in clinical practice.
Screening for prostate cancer has become a serious clinical concern in primary care, where physicians are the central players in an ongoing debate about offering preventive health services of unknown benefit and significant risk to patients who may not be aware of this uncertainty. Schapira and VanRuiswyk3 present a randomized comparative trial of a written decision-aid for prostate cancer screening. In their well-designed clinical trial, patients receiving an illustrated pamphlet showed greater knowledge about the accuracy of prostate cancer screening tests than did control-group patients, while no difference in the rate of screening was observed. These investigators compared 2 versions of a written pamphlet on prostate cancer screening. The comparison intervention pamphlet contained written information on prostate cancer epidemiology, symptoms, screening methods, and the benefits of screening. The decision-aid pamphlet included the same basic information plus a graphical design using human figures to represent the accuracy (sensitivity and specificity) of a combined screening strategy. The authors of this study evaluated the added impact of a graphical presentation of the accuracy of screening on patients’ knowledge, beliefs, and behaviors associated with screening for prostate cancer. It is not surprising that patients who received the decision-aid showed greater knowledge about the accuracy of prostate cancer screening.
The conceptual basis of decision-aids
How might we characterize the kind of decision-aid developed by Schapira and VanRuiswyk? In an excellent overview of the field of health care informatics and decision making, Hersey and colleagues4 draw a distinction between educational tools (which are preparatory and anticipatory of a decision that has already been made) and decision analysis tools (which are used to foster an informed decision by the patient). Similarly, O’Connor and coworkers5 use the term “tailored decision aids” to refer to patient education tools based on expected value decision theories in which models are developed to represent the structure of a decision, the probability of certain outcome events, and the patient’s valuation of those outcomes. Decision-aids can be prescriptive, using clinical decision-analysis to arrive at an optimal strategy on the basis of the expected value of the options considered. Descriptive decision-aids present probabilities and values to clarify the options and provide insight into the decision-making process.5 The tool developed by Schapira and VanRuiswyk would be considered a descriptive decision-aid, because it presents the probabilities of the accuracy of prostate cancer screening and encourages clarification of patients’ values associated with those outcomes.
Proponents of the paternalism model, which has dominated contemporary medicine, presume that the physician is the sole decision-maker and the patient plays a limited or no formal role in choosing a course of action. In contrast, the informed decision-making model and the shared decision-making model by Charles and colleagues6 include the active involvement of the patient. In the informed model, the patient is provided with all information relevant to making a decision and assumes final authority. In the shared model, patients are provided with all the pertinent information, and they work with the health care provider to come to a decision consistent with their personal values. The implementation of the decision-aid developed by Schapira and VanRuiswyk is consistent with an informed decision-making approach. Almost all decision-aids are associated with this approach.
Selecting clinical questions for decision-aids
Although it might be argued that all clinical decisions should involve various degrees of patient input, not all clinical decisions warrant the development of formal decision-aids. We suggest 3 criteria that should be met for a clinical decision to be considered appropriate for an informed decision-making intervention. First, there must be uncertainty; the optimal strategy must be unclear. Second, using a term by Kassirer,7 the decision must be “utility sensitive” that is, a patient’s preferences for the outcomes of treatment should be central to determining the optimal strategy. Finally, a patient’s preferences for the outcomes of treatment must vary sufficiently to warrant an individualized approach to assessment.