Understanding patient perceptions of shared decision making

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Abstract

Objective

This study aims to develop a conceptual model of patient-defined SDM, and understand what leads patients to label a specific, decision-making process as shared.

Methods

Qualitative interviews were conducted with 23 primary care patients following a recent appointment. Patients were asked about the meaning of SDM and about specific decisions that they labeled as shared. Interviews were coded using qualitative content analysis.

Results

Patients’ conceptual definition of SDM included four components of an interactive exchange prior to making the decision: both doctor and patient share information, both are open-minded and respectful, patient self-advocacy, and a personalized physician recommendation. Additionally, a long-term trusting relationship helps foster SDM. In contrast, when asked about a specific decision labeled as shared, patients described a range of interactions with the only commonality being that the two parties came to a mutually agreed-upon decision.

Conclusion

There is no one-size-fits all process that leads patients to label a decision as shared. Rather, the outcome of “agreement” may be more important than the actual decision-making process for patients to label a decision as shared.

Practice implications

Studies are needed to better understand how longitudinal communication between patient and physicians and patient self-advocacy behaviors affect patient perceptions of SDM.

Introduction

Shared decision making (SDM) has been suggested as an optimal approach to making health care decisions [1], initially on ethical grounds and increasingly as a means to improve patient outcomes [2], [3], [4]. Clinicians are now routinely encouraged to employ a SDM process with patients (e.g. [5], [6]). Despite this increased advocacy and attention, what exactly constitutes a shared decision making process is not always clear.

Among the academic literature, the most commonly cited definition of SDM is that developed by Charles and colleagues [7], [8]. This definition includes four key characteristics, all of which must be present to be considered a shared decision: both the patient and clinician are involved in all phases; both parties share information; both parties express treatment preferences; and agreement is reached [7], [9]. But other definitions exist (e.g. [3], [10]) and the most common way of measuring patient perceptions of SDM is using a modification of the Degner et al. Control Preferences Scale [11], [12]. This scale asks patients to rate their role in making a specific decision among five options: (1) I made the final decision, (2) I made the final decision after seriously considering my doctor's opinion, (3) My doctor and I shared the responsibility for deciding, (4) My doctor made the final decision but seriously considered my opinion, and (5) My doctor made the final decision. Option 3, while typically considered a shared decision, does not shed any light on how the decision making process actually occurred.

Understanding patient perceptions of SDM is important as a recent review found only patient-self reports of SDM to consistently have been associated with patient outcomes [12]. Furthermore, previous studies have found that patient perceptions of shared decisions differ from both observer ratings [13], [14], [15], [16], and physician perceptions of SDM [17], [18]. We know of only two studies that have directly explored the meaning of SDM to patients [19], [20]. While these studies highlighted important differences between patient perceptions of SDM and published definitions of SDM, they were not designed to understand what needs to have happened in a specific decision-making context for a patient to label it as shared. Thus, in order to attain the benefits of patient-perceived SDM in practice, we need to have a better understanding of specifically what it is that patients label as shared.

The aims of this qualitative study are to: (1) develop a conceptual model of patient-defined SDM, and (2) understand what leads patients to label a specific, decision-making process as shared on the modified Control Preference Scale.

Section snippets

Study setting and participant recruitment

Participants were recruited from an academic and safety net health system in Virginia. The health system's electronic scheduling system was queried to identify adults aged 50–75 years with a non-follow-up primary care visit in the general internal medicine or family medicine out-patient clinic scheduled in the next month. The electronic medical record was queried to identify who among those were due for colorectal cancer screening as this study is part of a larger project exploring how receipt

Sample characteristics

Across the batches of recruitment, a total of 60 patients were identified as potentially eligible via health system records. Twenty-one patients could not be reached at the telephone number listed in their medical record, 14 declined participation, and two were ineligible due to not attending their scheduled appointment. In total, 23 patients were interviewed (Table 1). Patient participants were primarily female (61%) and white (74%). The mean participant age was 63 years (SD = 10.4).

Patients’ conceptual definition of shared decision making

When asked

Discussion

When asked about the meaning of SDM in general, patients describe an interactive communication process that is similar to the commonly used definition of SDM developed by Charles and colleagues (1997, 1999). In particular, patients described two phases: an interactive exchange and making a decision. While patients use slightly different terms to describe the interactive exchange (mutual sharing of information, open-mindedness and respect for one another, patient self-advocacy, and a

Acknowledgments

Dr. Shay is supported by a post-doctoral fellowship, University of Texas School of Public Health Cancer Education and Career Development Program (National Cancer Institute/NIH Grant R25 CA57712). Financial support for this study was provided by a grant from the National Institute on Aging (1F31AG040923-01) and developmental projects award from the Center for Health Communications Research at the University of Michigan (5P50CA101451-09). The funding agreement ensured the authors’ independence in

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