Problem Addressed

Many newly diagnosed breast cancer patients are overwhelmed with their situation and do not know which questions to ask the doctor or how to use the information provided to make treatment decisions. Research suggests that certain strategies can address these problems, including connecting patients with decision aids, helping them list questions, and making notes and audiorecordings for them. 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
• Multiple barriers to meeting these needs: Breast cancer patients face many barriers that often prevent them from getting the information they need. 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 A needs assessment conducted at the University of California, San Francisco (UCSF) found that breast cancer patients faced significant barriers to gathering information, asking questions, and remembering responses. Specifically, patients told of reviewing inadequate, conflicting, or overwhelming information before appointments and not knowing which questions to ask. Many would “freeze up” during appointments and forget to ask important questions. When they did ask questions, the doctor’s answers would often “go in one ear and out the other.” Since the initial needs assessment, researchers continue to document these barriers, most recently among highly educated and affluent patients whose fear of being labeled “difficult” inhibits questioning and other important behaviors. ³
• Often unrealized potential of prompting and support: Research shows that prompting patients to write down their questions increases their participation in consultations^4,5 and that providing audiorecordings and summaries of visits increases patient recall and satisfaction.⁶ However, few cancer programs offer such services.

Description of the Innovative Activity

• Pre-appointment preparation: After patients schedule their medical visit, a premedical intern sends them an educational video and written decision aid. (Between 2010 and 2011, 672 patients received such materials.) The intern also attempts to contact patients to offer help in developing questions for their providers and to accompany them to their visits to assist with audiorecording and taking notes and to generally support them in communicating with their provider. During the question-listing session, the interns use a checklist to help stimulate patient questions, concerns, and priorities; they do not provide any medical advice or clinical information. Between 2010 and 2011, interns attempted to contact 1,771 clinic visitors to offer assistance; 1,030 responded and were found to be eligible for such services, 584 accepted the service, and 356 ultimately worked with interns to develop a list of questions and concerns over the telephone using the worksheet. The worksheet helps clarify six areas (known as SCOPED), as outlined below:
  • Situation: The diagnosis or other key facts
  • Choices: Testing and treatment options available
  • Objectives: The patient’s priorities, goals, and concerns
  • People: Patient and provider team roles and responsibilities
  • Evaluation: How the choices affect the objectives (including prognosis)
  • Decisions: Which choice is best and next steps
• Assistance during appointment: The intern e-mails the completed question list (known as a consultation plan) to the physician, who reviews it before the consultation. The intern also accompanies patients to their visits, audiorecords the session, takes notes, and reminds patients of any questions that were not addressed by the doctor.
• Postvisit support: The intern creates a written summary of the provider’s responses to the patient’s questions, with the summary being organized in parallel structure to the original question list. The patient receives both the audiorecording of the visit (on compact disc) and the printed consultation summary.
• End products: The end products include the following:
  • Consultation plan: A list of questions and concerns in the patient’s words, given to all parties before the visit
  • Consultation recording: An audiorecording 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 services to the surveys conducted before and after service delivery

References/Related Articles

Contact the Innovator

Innovator Disclosures

Results

• Improved visit preparation, decisionmaking, communication, and knowledge at UCSF's Breast Care Center: Evaluations of various aspects of the program found that it has improved visit preparation, patient-provider communication, and patient decisionmaking/knowledge, as outlined below:
  • Better visit preparation: A 2009 evaluation of 137 question-listing sessions found that participating patients had an average (mean) of 23 questions after the session, up from 9 before. Self-efficacy scores from 115 of these patients (those responding to a survey) averaged 8.1 (on a scale of 1 to 10), up from 6.7 before the session.⁷
  • Better communication: A quasi-experimental evaluation of 119 patients found that consultation planning reduced barriers to communication and improved both patient and physician satisfaction in the intervention group compared with controls.⁸ An evaluation of 37 patients using both the question-listing and audiorecording services found that they improved patient-provider communication. Physicians reported that the program gives them a means for better understanding the patient’s concerns and needs because it helps patients organize and clarify their thoughts in advance of the appointment.⁹
  • Better knowledge and decisionmaking: Several studies suggest that the program has enhanced decisionmaking and knowledge, as outlined below:
    • An evaluation of 37 patients found that the preappointment planning session resulted in a mean change in decisional self-efficacy of 7 percent and that pre-appointment planning and assistance during the appointment were associated with a 19-percent reduction in decisional conflict (although some of this effect may be attributable to the clinical consultation itself).⁹
    • A quasi-experimental evaluation of 24 patients found that recording the consultation improved the quality of decisionmaking compared with those in a control group.⁸
    • A 2009 evaluation of the recording and note-taking service found that 89 percent of those responding to a survey had reviewed the notes from their consultations within 6 weeks of their visits.⁷
    • An evaluation of 383 responses to condition-specific quizzes found that the number of correct responses increased from 46 to 73 percent after patients reviewed the decision aids sent to them. The same evaluation found that decisional conflict, a measure of a patient’s uncertainty regarding the best course of action, improved after patients reviewed the decision aids.⁷
• Similar findings in other settings: Meta-analysis and other systematic evaluations of specific program components are consistent with the findings from the university, as outlined 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.”⁸
  • Asking more questions: A general meta-analysis of 33 RCTs involving 8,244 patients found that interventions to help patients address information needs before 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 inperson coaching and written materials alone.¹⁰ A separate systematic review of question prompting in cancer patients found that the approach encouraged patients to ask more questions, particularly about their prognosis.¹¹
  • Increased knowledge: A Cochrane Collaboration review of 27 RCTs found that decision aids were associated with a statistically significant 15-percent improvement in knowledge.¹²

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., audiorecording 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 and consultation summaries: The Breast Care Center decided to use SCOPED to guide the development of the prompt sheet and consultation summaries. This decision framework builds on decades of development in engineering, psychology, economics, nursing, education, statistics, and other fields.
• Screening interns: Premedical interns are screened through "critical incident" interviews that ask for examples of how prospective candidates have been effective or ineffective in past jobs at relevant skills such as nondirective interviewing; low-inference paraphrasing and summarizing; displaying emotional intelligence in stressful situations; complying with applicable policies, procedures, and regulations; and communicating across cultures and generations.
• Training: Each premedical intern undergoes a comprehensive 2-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 cases), 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. 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 service unit applies program theory to guide continuous improvement, using interlocking plans: a strategic plan summarizing the context, charter, purpose, vision, mission, and goals of the program; a service utilization plan summarizing how patients will interact with premedical interns and what support the interns will provide; an operational plan describing what human resources, supplies, information technology, facilities, and other resources will need to be marshaled in support of the program; an evaluation plan describing how to collect, manage, analyze, and report data for key audiences; and a financial plan describing the costs of this program. 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, multiuser, 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 incident technique to facilitate further improvement.

Resources Used and Skills Needed

• Staffing: At the university, frontline program staff consist of 5 to 10 premedical interns who have been accepted into a 1- or 2-year program between college and medical school. In general, however, frontline 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 frontline staff. In the last year, the program has expanded to other clinics at UCSF under the umbrella of the Patient Support Corps, which trains and deploys undergraduate students as patient advocates providing the decision support services.
• Costs: The estimated cost of providing the service ranges from $50 to $150 per patient visit, depending on the level of support offered and the utilization rate of the service by patients (higher utilization spreads the fixed costs over more patient visits). At the university, research or program assistantships pay the full stipend for the interns, so the cost of paying their salaries is not borne by the program.

Funding Sources

Tools and Other Resources

• The program Web site is at: http://www.decisionservices.ucsf.edu.
• A Web site with information about the SCOPED model is at: http://www.scoped.org.
• Information about the Patient Support Corps can be found at: http://www.patientsupportcorps.org.
• Jeff Belkora's Web site (available at: http://www.jeffbelkora.com) provides a list of relevant academic references (http://www.jeffbelkora.com/evidence), among other articles and resources.
• With more than 200 pages, the 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 technical assistance with program design, followed by inperson or Web-based training followed by remote supervision through Web- or telephone-based case review meetings. Contact the program developer, Jeff Belkora, for more information.

Getting Started with This Innovation

• Find strong clinical champion: Laura Esserman, MD, Director of the university's Breast Care Center, participated in every step of development and rollout. 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.
• Use or adapt formal processes and frameworks: At the university, use of the Ottawa Decision Support Framework, SCOPED, RE-AIM, and Plan-Do-Study-Act has contributed to program success.
• Build and maintain steady referral pipeline: Although 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. To that end, provide continuous feedback to referral sources (e.g., clinic schedulers) on how the program has benefited patients.
• Explain role clearly to frontline staff: Frontline 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 paid administrator: This individual oversees frontline staff and coordinates the integration of the program into clinic workflow.

Sustaining This Innovation

• Consider 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 attract highly productive premedical interns, so they are willing to pay 100 percent of interns' salaries, even though they only receive 80 percent of their time. The program meets the needs of the faculty (who are looking for highly qualified 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. Volunteers could receive academic or other credit.
• 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 to $150 cost.
• Document program on continuous basis: The university has created a 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.
• Engage in continuous improvement: The university seeks feedback from all stakeholders, including physicians, patients, family members, clinic staff, nurses, and administrators and reports to stakeholders whenever program changes occur as a result of such feedback. For example, after physicians requested that examination rooms not be used for consultation planning, that service was moved into conference rooms and later to the telephone.

Use By Other Organizations