Mapping the Decision-Making Process for Adjuvant Endocrine Therapy for Breast Cancer: The Role of Decisional Resolve.

BACKGROUND: Studies show adjuvant endocrine therapy increases survival and decreases risk of breast cancer recurrence for hormone receptor-positive tumors. Yet studies also suggest that adherence rates among women taking this therapy may be as low as 50% owing largely to adverse side effects. Despite these rates, research on longitudinal patient decision making regarding this therapy is scant. OBJECTIVE: We sought to map the decision-making process for women considering and initiating adjuvant endocrine therapy, paying particular attention to patterns of uncertainty and decisional change over time. METHODS: A longitudinal series of semistructured interviews conducted at a multispecialty health care organization in Northern California with 35 newly diagnosed patients eligible for adjuvant endocrine therapy were analyzed. Analysis led to the identification and indexing of 3 new decision-making constructs-decisional phase, decisional direction, and decisional resolve-which were then organized using a visual matrix and examined for patterns characterizing the decision-making process. RESULTS: Our data reveal that most patients do not make a single, discrete decision to take or not take hormone therapy but rather traverse multiple decisional states, characterized by 1) phase, 2) direction, and 3) strength of resolve. Our analysis tracks these decisional states longitudinally using a grayscale-coded matrix. Our data show that decisional resolve wavers not just when considering therapy, as the existing concept of decisional conflict suggests, but even after initiating it, which may signal future decisions to forgo therapy. CONCLUSIONS: Adjuvant endocrine therapy, like other chronic care decisions, has a longer decision-making process and implementation period. Thus, theoretical, empirical, and clinical approaches should consider further exploring the new concept and measurement of decisional resolve, as it may help to improve subsequent medication adherence.

Implementation of Patient Decision Support Interventions in Primary Care: The Role of Relational Coordination.

BACKGROUND: The benefits of patient decision support interventions (DESIs) have been well documented. However, DESIs remain difficult to incorporate into clinical practice. Relational coordination (RC) has been shown to improve performance and quality of care in health care settings. This study aims to demonstrate how applying RC theory to DESI implementation could elucidate underlying issues limiting widespread uptake. METHODS: Five primary care clinics in Northern California participated in a DESI implementation project. We used a deductive thematic approach guided by behaviors outlined in RC theory to analyze qualitative data collected from ethnographic field notes documenting the implementation process and focus groups with health care professionals. We then systematically compared the qualitative findings with quantitative DESI distribution data. RESULTS: Based on DESI distribution rates, clinics were placed into 3 performance categories: high, middle, and low. Qualitative data illustrated how each clinic's performance related to RC behaviors. Consistent with RC theory, the high-performing clinic exhibited frequent, timely, and accurate communication and positive working relationships. The 3 middle-performing clinics exhibited high-quality communication within physician-staff teams but limited communication regarding DESI implementation across the clinic. The lowest-performing clinic was characterized by contentious relationships and inadequate communication. LIMITATIONS: Limitations of the study include nonrandom selection of clinics and limited geographic diversity. In addition, ethnographic data collected documented only DESI implementation practices and not larger staff interactions contributing to RC. CONCLUSIONS: These findings suggest that a high level of RC within clinical settings may be a key component and facilitator of successful DESI implementation. Future attempts to integrate DESIs into clinical practice should consider incorporating interventions designed to increase positive RC behaviors as a potential means to improve uptake.

Redefining Risk and Benefit: Understanding the Decision to Undergo Contralateral Prophylactic Mastectomy.

Rates of contralateral prophylactic mastectomy (CPM) among unilateral breast cancer patients are rapidly increasing; however, there are little data documenting the decision-making process of patients with no known BRCA mutations, who elect this more aggressive treatment. We conducted semistructured interviews with nine newly diagnosed patients who elected CPM over other surgical options. Using grounded theory, we analyzed interview data to identify influential decision-making factors by prevalence and intensity across participants. Decision-making factors included subjective evaluations of risk and benefit, avoidance of future breast cancer surveillance and accompanying worry, and desire to maintain (or improve) breast appearance. Based solely on survival benefit, the decision to undergo CPM might be viewed as unnecessary or even misguided. However, our findings show the importance of psychosocial factors in patients' assessments of risk and benefit, and support the need for additional patient-provider communication regarding these factors.

An exploratory mixed-methods crossover study comparing DVD- vs. Web-based patient decision support in three conditions: The importance of patient perspectives.

BACKGROUND: The last 15 years have witnessed considerable progress in the development of decision support interventions (DESIs). However, fundamental questions about design and format of delivery remain. METHODS: An exploratory, randomized mixed-method crossover study was conducted to compare a DVD- and Web-based DESI. Randomized participants used either the Web or the DVD first, followed by the alternative format. Participants completed a questionnaire to assess decision-specific knowledge at baseline and a questionnaire and structured qualitative interview after viewing each format. Tracking software was used to capture Web utilization. Transcripts were analyzed using integrated inductive and deductive approaches. Quantitative data were analyzed using exploratory bivariate and multivariate analyses. RESULTS: Exploratory knowledge analyses suggest that both formats increased knowledge, with limited evidence that the DVD increased knowledge more than the Web. Format preference varied across participants: 44% preferred the Web, 32% preferred the DVD and 24% preferred 'both'. Patient discussions of preferences for DESI information structure and the importance of a patients' stage of a given decision suggest these characteristics may be important factors underlying variation in utilization, format preferences and knowledge outcomes. CONCLUSIONS: Our results suggest that both DESI formats effectively increase knowledge. Patients' perceptions of these two formats further suggest that there may be no single 'best' format for all patients. These results have important implications for understanding why different DESI formats might be preferable to and more effective for different patients. Further research is needed to explore the relationship between these factors and DESI utilization outcomes across diverse patient populations.

Beyond barriers: fundamental 'disconnects' underlying the treatment of breast cancer patients' sexual health.

Sexual health concerns represent one of the most frequently experienced and longest-lasting effects of breast cancer treatment, but research suggests that service providers rarely discuss sexual health with their patients. Existing research examining barriers to addressing patients' sexual health concerns has focused on discrete characteristics of the provider-patient interaction without considering the broader context in which these interactions occur. Drawing on the experiences of 21 breast cancer survivors, this paper explores three ways in which fundamental cultural and structural characteristics of the cancer care system in the USA may prevent breast cancer survivors from addressing their sexual health concerns, including: (1) when patients discussed sexual health with their providers, their providers approached sexuality as primarily physical, while participants experienced complex, multidimensional sexual health concerns; (2) specialisation within cancer care services made it difficult for patients to identify the appropriate provider to address their concerns; and (3) the structure of cancer care literally disconnects patients from the healthcare system at the time when sexual side effects commonly emerged. These data suggest that addressing breast cancer survivors' sexual health concerns requires a multifaceted approach to health systems change.

A conceptual model of the multiple stages of communication necessary to support patient-centered care.

Patient-centered care requires that both healthcare providers and patients have access to comparative effectiveness research (CER), which provides direct comparisons of the risks and benefits of available clinical options. However, insufficient attention has been paid to developing the comprehensive communication systems necessary to ensure that CER reaches patients and healthcare providers. In this review, we propose a model of the multiple stages of CER communication necessary for patient-centered care and review the existing research and gaps in knowledge relevant to each stage. These stages include: promotion of the underlying concepts and value of CER; translation of CER results; dissemination of CER results; and utilization of the results of CER in shared decision-making between patients and providers. A comprehensive approach to CER communication is necessary to ensure that the growing interest in and availability of CER is able to support a more patient-centered model of healthcare.

Persistent barriers and strategic practices: why (asking about) the everyday matters in diabetes care.

PURPOSE: The purpose of this study was to explore the everyday barriers to and practices of low-income patients managing their diabetes. METHODS: The study team conducted semistructured qualitative interviews with 20 patients with type 2 diabetes who were receiving care at safety-net clinics in Southern California. Transcripts were analyzed using grounded theory to identify emergent themes across participants. RESULTS: Participants described managing diabetes with limited financial resources as often a game of balance and negotiation, whereby purchasing healthy foods is abandoned because of a more pressing concern in their life. Although participants described strategic attempts at incorporating healthy dietary practices for diabetes management into their daily decisions, these efforts were significantly impeded by the existence of persistent and seemingly insurmountable barriers. CONCLUSIONS: Although the challenges that low-income patients face in managing their diabetes may seem insurmountable at times, there are several ways that health care providers can help reduce the burden of these challenges, including tailoring their recommendations to incorporate the everyday socioeconomic environment of patients and engaging in clear, open communication with patients.

An effort to spread decision aids in five California primary care practices yielded low distribution, highlighting hurdles.

Despite the proven efficacy of decision aids as interventions for increasing patient engagement and facilitating shared decision making, they are not used routinely in clinical care. Findings from a project designed to achieve such integration, conducted at five primary care practices in 2010-12, document low rates of distribution of decision aids to eligible patients due for colorectal cancer screening (9.3 percent) and experiencing back pain (10.7 percent). There were also no lasting increases in distribution rates in response to training sessions and other promotional activities for physicians and clinic staff. The results of focus groups, ethnographic field notes, and surveys suggest that major structural and cultural changes in health care practice and policy are necessary to achieve the levels of use of decision aids and shared decision making in routine practice envisioned in current policy. Among these changes are ongoing incentives for use, physician training, and a team-based practice model in which all care team members bear formal responsibility for the use of decision aids in routine primary care.

Authoritarian physicians and patients' fear of being labeled 'difficult' among key obstacles to shared decision making.

Relatively little is known about why some patients are reluctant to engage in a collaborative discussion with physicians about their choices in health care. To explore this issue further, we conducted six focus-group sessions with forty-eight people in the San Francisco Bay Area. In the focus groups, we found that participants voiced a strong desire to engage in shared decision making about treatment options with their physicians. However, several obstacles inhibit those discussions. These include the fact that even relatively affluent and well-educated patients feel compelled to conform to socially sanctioned roles and defer to physicians during clinical consultations; that physicians can be authoritarian; and that the fear of being categorized as "difficult" prevents patients from participating more fully in their own health care. We argue that physicians may not be aware of a need to create a safe environment for open communication to facilitate shared decision making. Rigorous measures of patient engagement, and of the degree to which health care decisions truly reflect patient preferences, are needed to advance shared decision making in clinical practice.