Patient-centered communication and shared decision-making (SDM) have been increasingly advocated by health care providers and have been recognized as quality of care measures. The 2001 Institute of Medicine (IOM) report Crossing the Quality Chasm
included patient-centeredness as one of six key components of quality health care and has defined patient-centeredness as care that “establishes a partnership among practitioners, patients, and their families to ensure that decisions respect patients’ wants, needs, and preferences and that patients have the education and support they require to make decisions and participate in their own care” [1
]. Clearly, shared decision-making is at the core of patient-centered care. SDM recognizes the importance of having patients actively involved in their own care, a concept which is fundamental to many chronic disease models [2
]. Shared decision-making has also been positively associated with health outcomes such as improved diabetes control, preventive health services use, lowered blood pressure, and fewer hospitalizations [3
Despite this increased support of shared decision-making, there is currently no clear consensus about how SDM is defined or its central components; a recent systematic review found 31 distinct concepts used to describe SDM [8
]. However, one-third of papers in the review utilized the SDM conceptual models based on the work of Cathy Charles and colleagues, which describe three sequential domains of SDM: information-sharing, deliberation and decision-making () [9
Charles Model of Shared Decision Making
In addition, there has been limited research exploring how patients
conceptualize shared decision-making, but there is evidence of discrepancies between how SDM is conceptualized by researchers and how it is understood by patients [12
]. For example, one population-based study in Wales compared in-depth interviews about decision-making preferences in cholesterol testing and diagnostic mammography to patients’ responses on the Control Preferences Scale (CPS) [15
], an instrument measuring patient preferences for decision-making involvement [13
]. The researchers identified several barriers to accurately measuring patient preferences using the CPS, including heterogeneity in patient definitions of a “decision” and differences in the rationale for preferences.
Similarly, Entwistle et al. found discrepancies between interviews and survey data on decision-making preferences among women in the United Kingdom, and suggested that future research investigate the key features of “participation” in decision-making, as defined by patients [12
]. Charles et al. have acknowledged the potential for different patient perceptions about SDM and have called for research exploring the sociocultural and illness contexts in which patients understand and experience shared decision-making [9
This study sought to investigate how shared decision-making is conceptualized by African-American patients with diabetes. We were interested in understanding this population for several reasons. First, there is evidence that disparities in shared decision-making exist between African-Americans and whites [17
]. Second, there are significant racial disparities in diabetes outcomes. African-Americans have worse diabetes control, more diabetes complications and higher diabetes-related mortality than whites [20
]. Consequently, understanding and addressing inequities in shared decision-making among patients with diabetes has the potential to reduce diabetes-related health disparities. And finally, because individualized diabetes care requires ongoing treatment decisions, diabetes management and control may be particularly sensitive to patient/provider decision-making patterns.
The primary goal of this study was to develop a SDM model based on African-American diabetes patients’ conceptualization of SDM. Furthermore, to better understand the relationship between our model and the existing SDM literature, a second aim was to compare/contrast our findings with the primary elements presented in the Charles SDM model, which contains the following three key elements:
- Information-sharing. This model emphasizes the importance of bidirectional information-sharing, where both patients (and their families) and physicians (and other health care personnel) actively discuss symptoms, diagnoses, lifestyle issues, and other issues important in choosing a treatment plan [9–11].
- Deliberation. In the Charles model, patients and providers review the pros and cons of treatment options and discuss patient preferences. For patients with diabetes (and other chronic diseases), Charles et al. assign a greater weight to patient preferences, since patients have expertise in judging the feasibility of implementing treatments within the outpatient setting .
- Decision-making. In this model, decision-making is a joint endeavor in which patients and physicians agree on a treatment plan. Decision-making is the essential domain in this model; without active patient participation in the selection of a treatment plan, SDM has not occurred. For patients with diabetes (and other chronic diseases), the SDM model was expanded to include a discussion about implementation, during which patient self-efficacy to perform self-management tasks is reviewed [9–11].