Better Doctors, Better Patients, Better Decisions: Envisioning Health Care 2020

4. Do Patients Want Shared Decision Making and How Is This Measured?

4 Do Patients Want Shared Decision Making and How Is This Measured? Martin Härter and Daniela Simon Abstract Shared decision making is an approach where clinicians and patients communicate together using the best available evidence when faced with the task of making decisions. The chapter presents an overview of current research that focuses on patient participation , the level to which patients want to be involved in medical decisions, and strategies that assess the measurement of these preferences. While most patients (> 80%) want detailed information and physicians often underestimate this need, some patients clearly indicate a strong preference to participate in decision making. Patients’ preferences for participation can vary depending on factors such as age, gender, experience of illness, and relationship with the physician. At present, only a few psychometrically sound instruments are available to measure patients’ preferences for participation. Introduction Shared decision making has been advocated as an appropriate approach to involve patients in decision making. Since the late 1990s, when several publications on conceptual definitions of shared decision making emerged (Charles et al. 1997; Coulter 1997; Towle 1997), interest in this approach has steadily grown, especially for diseases for which more than one treatment option exists and the best choice depends on how a person values the benefits and harms of each option (O’Connor et al. 2009). Shared decision making is an approach where clinicians and patients communicate together using the best available evidence when faced with the task of making decisions. Patients are supported to deliberate about the possible attributes and consequences of options, to enable them to reach informed preferences about the best action to take—one which respects patient autonomy, where this is desired, as well as ethical and 54 M. Härter and D. Simon legal standards. Shared decision making is closely associated with the use of decision support interventions, also known as decision aids (Edwards and Elwyn 2009). Charles described a set of principles for shared decision making, stating “that at least two participants, the clinician and patient be involved; that both parties share information; that both parties take steps to build a consensus about the preferred treatment; and that an agreement is reached on the treatment to implement” (Charles et al. 1997). These principles rely on an eventual arrival at an agreement but this final principle is not fully accepted by others in the field (Makoul and Clayman 2006). Elwyn and colleagues described a set of competences for shared decision making composed of defining the problem that requires a decision, the portrayal of equipoise and the uncertainty about the best course of action, thereby leading to the requirement to provide information about the attributes of available options and support a deliberation process (Elwyn et al. 2000). Many publications that cover aspects of shared decision making prefer to use the terms “patient involvement” or “patient participation.” This conceptual variety implies problems of inconsistent measurement, of defining relationships of shared decision making and outcome measures, and of comparisons across different studies (Makoul and Clayman 2006). Intervention studies on better involvement of patients in medical decisions use basically three different approaches (Haywood et al. 2006). First, the training of health professionals can enhance patient involvement, patient and physician satisfaction, and treatment adherence (Loh et al. 2007; Maguire and Pitceathly 2002). Second, the use of patient decision aids leads to improved knowledge, more realistic expectations, less decisional conflict, greater patient satisfaction, and improved treatment adherence (O’Connor et al. 2009). Third, patient education can be accomplished through the use of leaflets, video tapes, or direct communication training; it can result in patients asking more questions during the consultation, perceiving more control over their health, showing a higher preference to play an active role in their treatment; and it can lead to a better understanding and recall of information and treatment recommendations (Brown et al. 1999; Cegala et al. 2001). Patients’ Need for Information and Participation While most patients want detailed information and physicians often underestimate this need, some patients indicate a strong preference to participate in decision making (Degner and Sloan 1992; Guadagnoli and Ward 1998; Auerbach 2001; Kaplan and Frosch 2005). Early studies with cancer patients reported that more than 60% expressed a desire to participate in clinical decisions (Cassileth et al. 1980; Blanchard et al. 1988). However, other studies indicate that the majority of cancer patients preferred their physician to make the actual Do Patients...