Coaching and guidance are structured approaches that can be used within or alongside patient decision aids (PtDAs) to facilitate the process of decision making. Coaching is provided by an individual, and guidance is embedded within the decision support materials. The purpose of this paper is to: a) present updated definitions of the concepts “coaching” and “guidance”; b) present an updated summary of current theoretical and empirical insights into the roles played by coaching/guidance in the context of PtDAs; and c) highlight emerging issues and research opportunities in this aspect of PtDA design.

The uptake of contralateral prophylactic mastectomy (CPM) has increased steadily over the last twenty years in women of all age groups and breast cancer stages. Since contralateral breast cancer is relatively rare and the breast cancer guidelines only recommend CPM in a small subset of patients with breast cancer, the drivers of this trend are unknown. This review aims to evaluate the evidence for and acceptability of CPM, data on patient rationales for choosing CPM, and some of the factors that might impact patient preferences. Based on the evidence, future recommendations will be provided. First, data on contralateral breast cancer risk and CPM rates and trends are addressed. After that, the evidence is structured around four main patient rationales for CPM formulated as questions that patients might ask their surgeon: Will CPM reduce mortality risk? Will CPM reduce the risk of contralateral breast cancer? Can I avoid future screening with CPM? Will I have better breast symmetry after CPM? Also, three different guidelines regarding CPM will be reviewed. Studies indicate a large gap between patient preferences for radical risk reduction with CPM and the current approaches recommended by important guidelines. We suggest a strategy including shared decision-making to enhance surgeons' communication with patients about contralateral breast cancer and treatment options, to empower patients in order to optimize the use of CPM incorporating accurate risk assessment and individual patient preferences.

Decision aids educate patients about treatment options and outcomes. Communication aids include question lists, consultation summaries, and audio-recordings. In efficacy studies, decision aids increased patient knowledge, while communication aids increased patient question-asking and information recall. Starting in 2004, we trained successive cohorts of post-baccalaureate, pre-medical interns to coach patients in the use of decision and communication aids at our university-based breast cancer clinic. From July 2005 through June 2012, we used the RE-AIM framework to measure Reach, Effectiveness, Adoption, Implementation and Maintenance of our interventions. 1. Reach: Over the study period, our program sent a total of 5,153 decision aids and directly administered 2,004 communication aids. In the most recent program year (2012), out of 1,524 eligible patient appointments, we successfully contacted 1,212 (80 %); coached 1,110 (73 %) in the self-administered use of decision and communication aids; sent 958 (63 %) decision aids; and directly administered communication aids for 419 (27 %) patients. In a 2010 survey, coached patients reported self-administering one or more communication aids in 81 % of visits 2. Effectiveness: In our pre-post comparisons, decision aids were associated with increased patient knowledge and decreased decisional conflict. Communication aids were associated with increased self-efficacy and number of questions; and with high ratings of patient preparedness and satisfaction 3. Adoption: Among visitors sent decision aids, 82 % of survey respondents reviewed some or all; among those administered communication aids, 86 % reviewed one or more after the visit 4. Implementation: Through continuous quality adaptations, we increased the proportion of available staff time used for patient support (i.e. exploitation of workforce capacity) from 29 % in 2005 to 84 % in 2012 5. Maintenance: The main barrier to sustainability was the cost of paid intern labor. We addressed this by testing a service learning model in which student interns work as program coaches in exchange for academic credit rather than salary. The feasibility test succeeded, and we are now expanding the use of unpaid interns. Reach: Over the study period, our program sent a total of 5,153 decision aids and directly administered 2,004 communication aids. In the most recent program year (2012), out of 1,524 eligible patient appointments, we successfully contacted 1,212 (80 %); coached 1,110 (73 %) in the self-administered use of decision and communication aids; sent 958 (63 %) decision aids; and directly administered communication aids for 419 (27 %) patients. In a 2010 survey, coached patients reported self-administering one or more communication aids in 81 % of visits Effectiveness: In our pre-post comparisons, decision aids were associated with increased patient knowledge and decreased decisional conflict. Communication aids were associated with increased self-efficacy and number of questions; and with high ratings of patient preparedness and satisfaction Adoption: Among visitors sent decision aids, 82 % of survey respondents reviewed some or all; among those administered communication aids, 86 % reviewed one or more after the visit Implementation: Through continuous quality adaptations, we increased the proportion of available staff time used for patient support (i.e. exploitation of workforce capacity) from 29 % in 2005 to 84 % in 2012 Maintenance: The main barrier to sustainability was the cost of paid intern labor. We addressed this by testing a service learning model in which student interns work as program coaches in exchange for academic credit rather than salary. The feasibility test succeeded, and we are now expanding the use of unpaid interns. We have sustained a clinic-wide implementation of decision and communication aids through a novel staffing model that uses paid and unpaid student interns as coaches.

Breast cancer risk reduction has been validated by large-scale clinical trials, but uptake remains low. A risk communication tool could provide personalized risk-reduction information for high-risk women. A low-literacy-friendly, visual, and personalized tool was designed as part of the Women Informed to Screen Depending On Measures of risk (WISDOM) study. The tool integrates genetic, polygenic, and lifestyle factors, and quantifies the risk-reduction from undertaking medication and lifestyle interventions. The development and design process utilized feedback from clinicians, decision-making scientists, software engineers, and patient advocates. We piloted the tool with 17 study participants, collecting quantitative and qualitative feedback. Overall, participants felt they better understood their personalized breast cancer risk, were motivated to reduce their risk, and considered lifestyle interventions. The tool will be used to evaluate whether risk-based screening leads to more informed decisions and higher uptake of risk-reduction interventions among those most likely to benefit.