Implementing decision and communication aids to facilitate patient-centered care in breast cancer: A case study
Introduction
The National Cancer Institute (NCI) defines patient-centered care as having three critical components: consideration of patients’ needs, perspectives, and individual experiences; provision of opportunities to patients to participate in their care; and enhancement of the patient–clinician relationship. These components serve to foster healing relationships, exchanging of information, responding to emotions, making decisions, managing uncertainty, and enabling patient self-management [1].
While patient-centered care is important in all health care fields, it is particularly crucial in breast cancer care. Breast cancer patients, even when diagnosed at an early stage, face invasive treatments with uncertain risks and benefits, such as surgical, radiation, hormone, chemical, and biologic therapies. Breast cancer patients seek, and specialists aspire to, the provision of patient-centered care. However, patients and specialists struggle to accomplish their goals, and studies have documented unmet information, communication, and support needs in the current provision of care [2], [3], [4].
A few interventions have been proven to facilitate the NCI's components of patient-centered care among cancer patients in general and breast cancer patients in particular. For example, decision aids are associated with improved patient knowledge and reduced decisional conflict [5], [6]. Visit preparation sessions help cancer patients [7], a plurality of whom were breast cancer patients in relevant studies [8], [9], [10], [11], [12], address their information needs by asking more questions covering a greater range of topics. The provision of audio recordings or consultation summaries generally increases cancer patient satisfaction, knowledge, and recall thereby ensuring the consideration of patient needs and aiding in the exchange of information [13]. More informed and involved patients experience other benefits including improved ability to cope during the diagnosis, treatment, and post-treatment phases; reductions in anxiety and mood disturbances; and greater satisfaction with treatment choices [14], [15], [16].
On the basis of these and other studies [12], [17], [18], [19], [20], we have routinely implemented decision aiding, visit preparation, audio-recording and consultation summarizing at the University of California, San Francisco (UCSF) Breast Care Center (BCC) [21]. Our implementation, in an organizational unit of the BCC known as Decision Services, now distributes over 800 decision aids to over 500 newly diagnosed patients each year. As a function of patient demand, and subject to capacity constraints, our team also provides question-prompting, audio-recording, note-taking and consultation summarizing services to around 250 newly diagnosed patients per year. The program is funded through grants, donations, and BCC discretionary funds. The Foundation for Informed Medical Decision Making, which produces the decision aids we distribute, contributes around 50% of the total cost as part of its effort to support demonstration sites where the decision aids are integrated into routine clinical practice.
Our published and unpublished evaluations have demonstrated that, as predicted by the evidence, our implementations of decision aiding, question prompting, audio-recording, and consultation summarizing are associated with high mean levels of patient knowledge, self-efficacy and satisfaction, and low mean decisional conflict [21]. However, we have found no case studies in the literature illustrating the sequencing and integration of multiple related decision support interventions into routine clinical care.
We therefore present a case study to illustrate the effects of our service utilization plan, or sequence of interventions and interactions with each patient, and organizational plan, which is how we deliver the interventions. These comprise two essential elements of our program theory [22].
Our study questions included:
- (1)
What service utilization and organizational plans were used to deliver decision support in this case, and did our practices match our program theory? (Program theory in practice).
- (2)
What did the patient in this case think was particularly effective or ineffective about our decision support practices? (Interview feedback).
- (3)
What were the decision-oriented outcomes in this case? What was this patient's state of knowledge, decision self-efficacy, decisional conflict, and preparation for decision making? (Survey outcomes).
Section snippets
Program design, participants, and sample
The Decision Services team consists of a faculty member in Surgery and Health Policy who directs the service (author JB), one program associate (author SV), and a variable number of premedical interns (eight in 2007, including author ML, all recent college graduates). The premedical interns work primarily for other faculty members within the Breast Care Center as research or program associates, but are assigned to work for Decision Services for 20% of their time, in order to gain additional
Study question 1 (program theory in practice)
According to our program's organizational plan, Decision Services premedical interns continually monitor their assigned portion of the clinic schedule daily to find “new patient, 60 minute” or N60 appointments, indicating that the patient is scheduled into a slot reserved for treatment decision making consultations. In this way, premedical intern ML identified Ms. X as a potential candidate for decision support before an upcoming medical oncology appointment, and abstracted Ms. X's information
Study Question 1 (program theory in practice)
Upon comparing our program theory and practice in the case of Ms. X, we found that the case illustrates a successful implementation of our service utilization and organizational plans. Ms. X received all decision support interventions at the designated time points, designed to promote increases in decision self-efficacy and knowledge, preparation for decision making, and reductions in decisional conflict. The decision support interventions were delivered with high fidelity, for example
Acknowledgments
The authors wish to thank Ms. X, the patient who is the primary subject of this case study. Thanks to Martha Daschbach for assistance with regulatory compliance and quality assurance. We wish to acknowledge Dr. Laura Esserman, who directs the UCSF Breast Care Center, and who has influenced the evolution of Decision Services as a clinical champion and sponsor, as well as Karen Sepucha, a long-time collaborator and contributor to our program design. The faculty of the Breast Care Center
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