• heart disease

Current guidelines for treatment of patients with cardiovascular disease often recommend we consider ‘patient preferences and values’ and involve the patient in ‘shared decision making’. However, there are few objective published data on the patient’s perspective and little guidance for effectively involving patients in decision making. Although research on these issues might seem like ‘soft’ science, we urgently need solid evidence for these terms to be more than empty words.

Treasure and colleagues1 present the first steps toward a decision support framework for timing of aortic root surgery in adults with Marfan syndrome. Patients, family members and providers were asked to rank the importance of several factors including timing of surgery (postpone vs get it over with); avoiding anticoagulation (particularly if pregnancy is being considered); avoiding other medications, hospital tests or noise from the prosthetic valve; and having an active lifestyle. The results indicate that lifestyle is more important to men compared with women. Both not deferring surgery and avoiding anticoagulation in the interest of childbearing were more important to patients than to physicians. The authors conclude: “Given the cogency of these viewpoints, people anticipating root replacement surgery should have ample opportunity to express them and to have them acknowledged ahead of a consultation when they can then be fully explored in a mutually informed forum. If they differ from local medical practice, they can then be discussed in the process of reaching shared and individualised decisions.”

In an accompanying editorial, Groenink and Koolbergen2 discuss the complexities of timing of surgery …