Personalized Support Improves Patient-Physician Communication and Enhances Decision Making for Breast Cancer Patients

Problem Addressed

Many newly diagnosed breast cancer patients are often overwhelmed with their situation and do not know what questions to ask the doctor or how to use the information provided to make treatment decisions. Research suggests that assisting these patients makes them more willing to ask questions and better able to understand and use the information provided, yet few programs offer such services.

• Significant information needs: A recent systematic review found that cancer patients have significant information needs throughout the diagnostic and treatment process.¹
• Hesitant to ask questions: Some patients withhold questions and concerns during consultations for fear of wasting the doctor’s time, while others do not know how to raise their concerns or have a discussion with their doctor. One study found that 64 percent of breast cancer patients reported three or more barriers to communication with their physician.² 
• Often unrealized potential of prompting and support: Research shows that prompting patients to write down their questions increases their participation in consultations,^3,4 and that providing audio recordings and summaries of visits increases patient recall and satisfaction.⁵ Few cancer programs offer such services, however.

Description of the Innovative Activity

• Pre-appointment preparation session: When patients schedule their medical visit, they are sent educational videos and offered the opportunity to be accompanied on their visit by a premedical intern. If the patient accepts this offer (roughly 500 patients each year receive the video and 300 accept the offer for assistance), a premedical intern and the patient meet one hour before the appointment in or near the exam room to prepare a list of questions for the doctor. (If more convenient for the patient, the intern and patient can meet by phone in the days before the appointment.) During this consultation planning session, the intern uses a structured worksheet to help ensure that the patient’s questions, concerns, and priorities are raised and discussed with the doctor. The intern does not provide any medical advice or clinical information during the consultation planning session. The worksheet covers six areas (known as "SCOPED"), as outlined below:
  • Situation: Questions about the diagnosis or other situational factors
  • Choices: Questions about testing and treatment options
  • Objectives: Patient’s priorities and key decision points
  • People: Questions about the need for support and available resources
  • Evaluation: Questions about how the choices affect the objectives (including prognosis)
  • Decisions: Key decisions and the decisionmaking process
• Assistance during the appointment: The intern shares the completed planning worksheet (known as a Consultation Plan) with the physician to help guide the discussion, and remains with the patient during the appointment. The intern also audiotapes the session, takes notes on what transpires, and ensures all patient questions are addressed.
• Post-visit support: The intern creates a written summary of the provider’s responses to the patient’s questions, with the summary being organized in parallel to the consultation planning worksheet. The patient receives both the audio recording of the visit (on compact disc) and the printed consultation summary.
• End products: The end products are as follows:
  • Consultation plan: A list of questions and concerns in the patient’s words, given to all parties before the visit.
  • Consultation recording: An audio recording of the patient visit.
  • Consultation summary: A summary of the physician’s responses to patient questions and concerns.
  • Internal process-oriented records: Collection of data by staff on every facet of the program, from the reasons patients accept or decline to the surveys conducted before and after service delivery.

References/Related Articles

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Results

• Improved decisionmaking and better communication at the university: An evaluation of 37 patients using the university service found that it improved patient decisionmaking and patient-provider communication, as outlined below⁶:
  • Better decisionmaking: The pre-appointment planning session resulted in a mean change in decisional self-efficacy of 7 percent. The pre-appointment planning session and the assistance during the appointment resulted in a 19 percent reduction in decisional conflict, although some of this effect may be attributable to the clinical consultation itself.
  • Better communication: Physicians report that the program gives them a means for better understanding the patient’s concerns and needs, as it helps patients to organize and clarify their thoughts in advance of the appointment.
• Meta-analysis and other systematic evaluations of specific program components: Evaluations of specific program components (implemented at the university and other settings) have generally found a positive impact, as summarized below: 
  • Higher satisfaction and better recall: A meta-analysis of 11 randomized controlled trials (RCTs) involving more than 1,013 patients and clinicians found that “between 83 and 96 percent of participants found recordings or summaries of their consultations to be valuable. Five out of nine studies reported better recall of information for those receiving recordings or summaries. Four out of seven studies found that participants provided with a recording or summary were more satisfied with the information received.”⁷
  • Asking more questions: A general meta-analysis of 33 RCTs involving 8,244 patients found that interventions to help patients address information needs prior to consultations (for a range of conditions and settings) generated small but statistically significant increases in question asking and patient satisfaction. These increases were greater than those achieved through use of in-person coaching and written materials alone.⁸ A separate systematic review of question prompting in cancer patients found that the approach encouraged patients to ask more questions, particularly about their prognosis.⁹
  • Improved communication and decisionmaking: An evaluation of 119 patients found that one component of the program, consultation planning, reduced barriers to communication and improved both patient and physician satisfaction. An evaluation of 24 patients found that another component, consultation recording, improved decision quality.⁷

Evidence Rating (What is this?)

Context of the Innovation

Planning and Development Process

Key steps in the planning and development process included the following:

• Developing formal charter: Program leaders created a formal charter laying out the vision for the program.
• Surveying stakeholders: A survey of key institutional stakeholders found no major resistance to the concept. Physicians were receptive to the idea as long as it did not interfere with the usual clinical workflow. 
• Assessing patient needs: A patient needs assessment identified the key types of support that patients wanted from the program.
• Adapting existing conceptual framework: The university adapted the Ottawa Decision Support Framework by linking specific services to patient visits. This conceptual framework focuses on helping patients express their needs (questions and concerns) before a visit; providing decision support during the visit (e.g., audio recording and summarizing the provider’s answers to patient questions); evaluating the impact of the decision support after the visit; and anticipating the patient’s next pass through the “visit cycle” (e.g., if they go from the surgeon to a plastic surgeon or oncologist).
• Using decision-analytic framework to guide prompt sheet, consultation summaries: The university decided to use SCOPED (described previously) to guide the development of the prompt sheet and consultation summaries. This decision framework builds on decades of development in the fields of engineering, psychology, economics, nursing, education, statistics, and others. 
• Screening interns: As of March 2009, premedical interns are also screened for aptitude in supportive, neutral communication through "critical incident" interviews that ask for examples of how prospective candidates have been effective or ineffective in past jobs at relevant skills (e.g., low-inference paraphrasing and summarizing, maintaining neutrality, displaying emotional intelligence in stressful situations, complying with applicable regulations, speaking the truth). Many candidates have prior experience in peer counseling programs or other types of psychosocial support environments.
• Training: Each intern undergoes a comprehensive 3-day training program that includes sessions on key policies and procedures (e.g., how to offer the service and set appropriate boundaries and expectations with patients); simulations of the various components of the services (using de-identified patients); and review and practice on key models of low-inference paraphrasing and summarizing and on the SCOPED checklist. Following the formal session, interns are closely supervised and observed for 6 weeks by an experienced facilitator. After this period, facilitators are certified for solo practice. To maintain certification, interns attend weekly case review meetings led by the developer of the program or another experienced facilitator. These meetings use the critical incident technique to reflect on productive and unproductive practices. In 2008, the university also developed a 150-page policies and procedures manual and a 200-page reference guide to assist interns on an ongoing basis.  
• Design, testing, and ongoing evaluation: The university uses a formal process to guide ongoing testing and evaluation, known as CReDITED (Charter, Requirements, Design, Implementation, Testing, Evaluation, Dissemination/Diffusion). The goal is to continuously improve and adapt to a changing environment, while staying true to the underlying conceptual model and principles. Evaluation is an ongoing process, with assessments of early iterations of the program playing a key role in the refinement and improvement process. In 2008, the university invested in an online, multi-user relational database to capture program data more efficiently. Program leaders plan to use this resource to share de-identified materials with patients and researchers, thus stimulating continuous improvement. Finally, the university recently adopted the RE-AIM framework (reach, effectiveness, adoption, implementation, maintenance), the Plan-Do-Study Act improvement methodology, and the Critical Incidence Technique to facilitate further improvement.

Resources Used and Skills Needed

• Staffing: The program staff includes anywhere from five to eight premedical interns who have been accepted into a 1- or 2-year program between college and medical school. Front-line program staff can be paid employees or volunteers, and they may be peers (e.g., survivors/former patients), students (e.g., premedical, medical, nursing, counseling), or professionals (e.g., nurses, social workers). At the university, internships are highly competitive, attracting applicants from across the country. University interns spend 4 days per week working with faculty as research assistants, and 1 day per week engaged in the program. The program also has a paid administrator who coordinates scheduling and oversees front-line staff.
• Costs: The estimated cost of providing the service ranges from $50 to $150 per patient visit, depending upon the level of support offered and the utilization rate (higher utilization spreads the fixed costs over more patient visits). At the university, research assistantships pay the full stipend for the interns, so the cost of paying their salaries is not borne by the program.

Funding Sources

University of California, San Francisco; Foundation for Informed Medical Decision Making

Tools and Other Resources

• The Guidesmith Web site (available at: http://www.guidesmith.org/) provides consultation planning prompt sheets (http://www.guidesmith.org/questions-for-your-doctor/), a description of how to use a development process to adapt the Consultation Planning, Recording and Summarizing service in another organizational setting, information about SCOPED workshops led by the innovator, Jeff Belkora, and other resources related to Consultation Planning and the University of California San Francisco Decision Services program.
• The 200+ page Decision Services reference guide and training program is available to collaborating organizations; contact the program developer, Jeff Belkora, for more information.
• Would-be adopters can apply to attend training sessions, or to solicit customized training and technical assistance from the University of California San Francisco. These customized programs feature in-person training followed by remote supervision through Web- or phone-based case review meetings. Contact the program developer, Jeff Belkora, for more information.
• See http://breastcarecenter.ucsfmedicalcenter.org/decisionmak.html for information about decisionmaking services at the the University of California San Francisco Breast Care Center.

Getting Started with This Innovation

• Find a strong clinical champion: Laura Esserman, MD, Director of the university's Breast Care Center, participated in every step of development and rollout. In general, physicians must initially be at least tolerant of the program. Most will recognize the benefit to patients, and will be supportive as long as it does not disrupt workflow. As the program grows, physicians may benefit from their patients being better prepared, thus making consultations more productive.
• Use and/or adapt formal processes and frameworks: At the university, use of CReDITED, the Ottawa Decision Support Framework, SCOPED, RE-AIM, and Plan-Do-Study Act has contributed to program success. 
• Build and maintain a steady referral pipeline: While the program can be run from within a clinic or in a centralized resource center, tight integration and coordination with the clinic schedule is necessary to achieve enough volume for the service to justify having trained staff. It is important to provide continuous feedback to referral sources (e.g., clinic schedulers) on how the program has benefitted patients.
• Explain role clearly to front-line staff: Front-line staff must understand their role clearly, including that they must remain neutral, avoid giving medical advice or information, and maintain certain role boundaries with patients. For example, even though program staff are often easier to reach than physicians, they cannot relay messages from doctors to patients. Likewise, program staff must not touch medical records or perform any task for which they are not trained, as the risk of errors that could compromise quality and safety is too great.
• Hire a paid administrator: This individual oversees front-line staff and coordinates the integration of the program into clinic workflow.

Sustaining This Innovation

• Consider using telephone consultations: The service can be delivered by telephone or in person. As a cognitively oriented program, the service is well-suited to the telephone, especially if the patient has access to e-mail or a fax machine and can review drafts of the Consultation Plan. In other settings, prompt sheets have even been self-administered by patients, who use them as a set of "Frequently Asked Questions" and circle or modify the ones that apply.
• Tap into multiple funding sources: The university's Breast Care Center faculty members believe that this program helps to attract the best and brightest premedical interns, so they are willing to pay 100 percent of the salary for interns, even though they only receive 80 percent of their time. The program meets the needs of the faculty (who are looking for great research assistants), premedical interns (who are looking for patient interactions), patients (who are looking for support), and the university medical center (which is committed to providing patient-centered care).
• Consider using trained volunteers: Other organizations have been able to attract volunteers to perform the service because it features such heavy patient and physician interaction, is intrinsically rewarding, and can help people gain experience as they position themselves for career changes or further training. The volunteers must be properly screened, trained, and supervised by professionals.
• Consider adopting individual components (if entire program is not possible): As noted earlier, discrete elements of the program, such as consultation planning, have been found to be effective on their own.
• Consider charging fees to those who can afford it: The program could generate revenues through use of a sliding-scale fee schedule that requires full payment from those who can afford it but offers a reduced rate or free service to low-income patients. In an environment where patients pay out of pocket for complementary therapies and coaches, some might be willing to pay the $50-$150 cost.
• Document program on a continuous basis: The university has created a 200+ page reference guide that documents almost every aspect of the program. This living document is continuously updated. Because the program operates in an environment where one must be sensitive to patient and provider confidentiality and the potential for error or conflict, the university is particularly focused on documenting the boundaries, conditions, and scripts that govern the program’s practices.
• Evaluate staff performance: The university evaluates program staff on how well they generate program outputs and comply with program procedures.
• Engage in continuous improvement: The university seeks feedback from all stakeholders, including physicians, patients, family members, clinic staff, nurses, and administration, and reports to stakeholders whenever program changes occur as a result of such feedback. For example, after physicians requested that exam rooms not be used for consultation planning, that service was moved into conference rooms.

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