Shared decision-making occurs when both health care providers and patients agree, in a give-and-take setting, on what should be the best treatment strategy for a patient. The approach is rapidly being recognized as the ideal model of patient-physician communication, especially in chronic diseases. Here, there must be agreement as to what a patient will do in the day-to-day management of his or her disorder. In a study conducted in Germany, Heesen and colleagues studied prerequisites for patient participation in decision making, as well as the effects of evidence-based patient information on decision making processes in patients with multiple sclerosis (MS). In their initial work, they found that 80% of MS patients demand autonomous roles in treatment decisions, although they often had poor knowledge of risks. On the other hand, these same patients understood evidence-based information and could transfer this information to their actions in new settings. The patient’s major information interests were related to symptom alleviation, diagnostic procedures, and prognosis. The investigators reported they were looking at the effects of a 4-hour education program on relapse management versus an information leaflet as controls in 150 multiple sclerosis patients in a controlled trial. In a second trial including 280 MS patients, the investigators plan on seeing what the effects will be of an evidence-based decision aid on immunotherapy, on decisional role preference, and performance in the patient-physician encounter. As the article described ongoing research, no data were presented.

COMMENTS: Heesen and coworkers assume that patient education programs will improve self-management abilities and the sense of control over the disease. If this occurs, they added, further modules covering all aspects of multiple sclerosis can be developed and tested. In a way, this report places the cart before the horse, as there is no solid evidence that their program will generate the data they predict. On the other hand, however, there is no reason to question that these results will not occur. Patients and their families assume considerable responsibility for the daily care of M.S. Most are highly motivated to learn and perform skills that might improve the management of their condition. In turn, the performance of these skills will not only control, but perhaps retard the progressive nature of the disorder. We, along with M.S. patients and their families, eagerly await the findings from this study and others like it.

C. Heesen et al. Shared decision making and self-management in multiple sclerosis - a consequence of evidence. Journal of Neurology, 2007;254, Suppl 2:II116-II121.