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Shared Decision Making for Breast Cancer Patients Leads to High Levels of Patient Satisfaction, and Comfort With Decisions and Treatment Preferences


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Snapshot

Summary

Dartmouth-Hitchcock Medical Center fully integrates shared decision making into breast cancer care through the Center for Shared Decision Making, which proactively contacts breast cancer patients to provide them with information that will help them choose a course of treatment based on their own preferences and concerns. Newly diagnosed patients receive a free video/DVD, booklet, and questionnaire to help prepare them for their initial surgeon visit; one-on-one counseling sessions with center staff are also available. The program has helped patients understand their treatment options, made patients more comfortable with and reduced conflict about the decisions they make, and improved the quality of patient–surgeon interactions. Patient satisfaction with the program is also high.

Evidence Rating (What is this?)

Moderate: The evidence consists of scores on post-implementation satisfaction surveys and knowledge tests, pre- and post-implementation comparisons of levels of decisional conflict, and anecdotal reports from surgeons.
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Developing Organizations

Comprehensive Breast Program; Dartmouth-Hitchcock Medical Center, Center for Shared Decision Making
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Use By Other Organizations

With the help of the Foundation for Informed Medical Decision Making, the University of California San Francisco and Allegheny General Hospital have created similar programs to foster shared decision making in breast cancer care. Through its Breast Cancer Initiative, the foundation’s breast cancer videos are also being incorporated into care at a number of other hospital and clinic sites across the country. In addition, the foundation has funded demonstration projects at 11 hospital and clinic sites where other shared decision making aids are being integrated into primary care/internal medicine practices.

Date First Implemented

1999
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Patient Population

Gender > Female; Vulnerable Populations > Womenend pp

Problem Addressed

Shared decision making—the collaboration between patients and caregivers in making a decision about medical care—can allow a patient to feel more comfortable with and confident in his or her treatment-related decisions. However, this approach is seldom used by hospitals or medical practices.
  • Many potential benefits of shared decision making: In shared decision making, the caregiver provides information to the patient that facilitates understanding of the possible outcomes of various treatment options, and encourages the patient to consider aspects of each option that are personally important and to fully participate in decisions about medical care.1 Shared decision making processes can be used in all specialties, even in situations when strong medical evidence exists in support of a particular treatment option.2 Shared decision making tools have been shown to increase patients’ knowledge about their conditions and options for treatment. They can also lead to changes in the treatment option ultimately selected, indicating that standard clinical decision making practices may not sufficiently prepare patients for making such choices.3 Furthermore, patients who use decision tools report less conflict regarding and greater satisfaction with their treatment decisions.4,5
  • Yet they are seldom offered: Anecdotal information suggests that because of the nature of their education and training, their high level of comfort with particular treatments, and time constraints, many physicians make or strongly influence care decisions without engaging patients in the process or determining their preferences for treatment.2

What They Did

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Description of the Innovative Activity

Dartmouth-Hitchcock Medical Center fully integrates shared decision making into breast cancer care through the Center for Shared Decision Making, which proactively contacts breast cancer patients to provide them with information that will help them choose a course of treatment based on their preferences and concerns. Newly diagnosed patients receive a free video/DVD, booklet, and questionnaire to help prepare them for their initial surgeon visit; one-on-one counseling sessions with center staff are also available. Key elements of the program include the following:
  • Logistics related to initial diagnosis and scheduling: Patients with an abnormal finding typically receive an image-guided needle biopsy performed by a radiologist with Dartmouth-Hitchcock Medical Center’s Comprehensive Breast Program. If the results indicate the presence of cancer, the radiologist speaks with the patient to present the diagnosis. A breast program social worker follows up on that conversation to support the patient by asking about her needs and outlining subsequent care steps. The radiology department notifies the breast program’s appointment schedulers of each new patient and her diagnosis. The schedulers work with patients to make all necessary appointments, including the initial appointment with the surgical oncologist. The schedulers also inform the Center for Shared Decision Making about the patient and her diagnosis.
  • Mailing shared decision making materials in advance of surgeon visit: The center automatically mails the patient a package of materials applicable to her diagnosis. The package includes a video/DVD designed to help patients understand the various breast cancer treatment options and formulate questions for the surgeon; a booklet reiterating the information provided in the video; and a questionnaire that assesses the patient’s breast cancer knowledge, values, and preferred treatment option(s). Videos/DVDs that can be mailed to patients (developed by the Foundation for Informed Medical Decision Making and produced by Health Dialog, Inc.) include the following:
    • Early Stage Breast Cancer: Choosing Your Surgery: This video outlines treatment options for women with early-stage (stages I and II) invasive breast cancer, including mastectomy or lumpectomy and radiation. Information includes an explanation of how cancer grows in the breast, a description of each surgical treatment option, a comparison of the treatments, and questions to consider.
    • DCIS (Ductal Carcinoma in Situ): Choosing Your Treatment: This video outlines treatment options for women diagnosed with DCIS, including lumpectomy, lumpectomy and radiation, tamoxifen (generally combined with lumpectomy and radiation), and mastectomy. The video outlines data comparing treatment options with respect to the subsequent chance of developing invasive breast cancer or a recurrence of DCIS. Patients who have selected each of the treatment options discuss their decision making process and the physical and emotional impact of the treatment.
    • Breast Reconstruction: Is It Right for You?:This video discusses decisions related to breast reconstruction, including whether and when to have it, along with various reconstruction options.
    • Early Breast Cancer: Hormone Therapy and Chemotherapy—Are They Right for You?: This video and accompanying booklet help women who have not had hormone therapy or chemotherapy, but are considering one or both treatments following surgery.
    • Living With Metastatic Breast Cancer: Making the Journey Your Own: This video presents the perspectives of four women on living and coping with metastatic breast cancer, including strategies that have helped to do so.
  • One-on-one counseling and followup: Patients can have a one-on-one session with a trained counselor if they so desire; in practice, a small portion of women request such a session. As the session begins, the counselors make it clear that they are not invested in the particular choice the patient ultimately makes. Rather, their goal is to guide the discussion to allow the patient to make an informed decision based on personal preferences and values. To that end, they use the Ottawa Personal Decision Guide©, which helps patients identify where they are struggling in their decision making process. During the session, women often want to tell their story and discuss their thought processes and/or their family members’ opinions about treatment selection. Counselors also identify the patient’s needs related to additional support or information. If necessary, the counselor follows up with the patient after the initial session, with the ultimate goal being to help patients make a decision with which they are comfortable.
  • Links to other information: The center’s Web site provides links to other shared decision making tools related to breast cancer, including worksheets, videos, booklets, and a decision guide.

Context of the Innovation

Dartmouth-Hitchcock Medical Center, an academic medical center with 396 inpatient beds, serves as a tertiary care referral site for northern New England. The hospital and its four breast surgeons treat approximately 350 newly diagnosed breast cancer patients each year. Research conducted by Dr. Jack Wennberg, a well-known Dartmouth physician and researcher, revealed that patients tend to select less invasive treatment than that recommended by their physician when the decision making process incorporates patient preferences. As a result, Dr. Wennberg promoted the development of tools to help patients better understand their options and personal preferences, and then empower them to collaborate with their caregivers in the decision making process. He eventually cofounded the Foundation for Informed Medical Decision Making, which was initially housed in Hanover, NH, but now operates as an independent organization in Boston. Dartmouth-Hitchcock’s Center for Shared Decision Making—the first patient-focused facility of its kind in the United States—partnered with the medical center’s Comprehensive Breast Program to implement the foundation-developed decision aids related to breast cancer care.

Did It Work?

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Results

The shared decision making program has helped patients understand their treatment options, made patients more comfortable with and reduced conflict about the decisions they make, and improved the quality of patient–surgeon interactions. Patient satisfaction with the program is also high.
  • Understanding the treatment options: After watching the decision aid videos, 230 patients completed a questionnaire about their decision making; 89 percent indicated they knew the available treatment options and the risks of each treatment option, while 94 percent knew the benefits of each option. In addition to feeling informed, high scores on a multiple choice knowledge quiz (average: 80 to 91 percent correct) indicate these patients understood the key facts associated with their treatments.
  • More comfortable with decisions: 2,557 patients received video decision aids between 2004 and 2009. An analysis of a subset returning questionnaires (n = 910) found that patients were less unsure about their treatment after watching the decision aid (39 percent before viewing the materials compared to 30 percent afterward). These patients also indicated that they felt clear about which treatment benefits and risks matter most to them (89 percent) and nearly one-fourth (24 percent) changed their treatment intention after viewing the video.
  • Reduced conflict about the decision: A study of 125 patients using the Decisional Conflict Scale5 indicated that overall decisional conflict scores, which were initially high, decreased after viewing the video and again after the surgical consultation. The scale’s scores range from 0 (low decisional needs) to 100 (high decisional needs); scores less than 25 are associated with implementing decisions, while scores greater than 38 are associated with decisional delay. After the video, lower decisional conflict was driven by score reductions on two subscales: feeling uninformed and feeling unclear about personal values. After the consultation, participants reported further declines in all subscales, particularly in the support and personal uncertainty subscales.
  • Improved quality of surgeon–patient interactions: Anecdotal reports from surgeons indicate that their conversations with patients, while not shorter, are at a higher level since the program began. In addition, surgeons also believe that the conversations can now be better tailored to each woman’s case.
  • High patient satisfaction: Patients are very satisfied with the decision aids and service provided by the center. In a survey of 230 patients, 94 percent indicated that the decision aid content was clear; 93 percent felt the information presented about treatment options was balanced; and 98 percent would recommend the videos to others making the same decision. In a sample of 250 patients, 99 percent reported being satisfied (good, very good, excellent) with the convenience of program offerings, 98 percent with the courtesy and friendliness of center staff, and 95 percent with the helpfulness of service. In addition, 96 percent indicated a willingness to recommend the service to other patients.

Evidence Rating (What is this?)

Moderate: The evidence consists of scores on post-implementation satisfaction surveys and knowledge tests, pre- and post-implementation comparisons of levels of decisional conflict, and anecdotal reports from surgeons.

How They Did It

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Planning and Development Process

Key steps in the planning and development process are outlined below; additional guidance can be found in a variety of toolkits provided by the Center for Shared Decision Making (see the Tools and Other Resources section for more information on these resources).
  • Identifying clinical champion: Center for Shared Decision Making staff identified a clinical champion at the breast program who believed in shared decision making and was willing to provide “on the ground” support for the program.
  • Assessing physician needs: Center staff met with each breast program surgeon individually to ask about his or her needs regarding patient communication and decision making. Physicians also had an opportunity to view the video and review the accompanying materials, after which they were asked if they would allow the center to send them to their patients.
  • Mapping current workflow, integrating tools into it: Center staff and breast cancer clinicians mapped the current clinical workflow. Participants then determined where tools could be optimally integrated and revised the workflow map accordingly.
  • Designing data collection process and feedback reports: Participants designed the patient questionnaire to yield data to inform process improvement and meet research objectives, along with performance feedback reports for individual clinicians and administrators (who received aggregated data).

Resources Used and Skills Needed

  • Staffing: Five individuals serve as the core staff of the center; two provide one-on-one counseling to patients and three perform administrative duties. (Note: The percentage of staff time devoted specifically to breast cancer services cannot be determined.)
  • Costs: The center has access to the decision aids, free of charge, from the Foundation for Informed Medical Decision Making. Program developers estimate that the costs of running a center such as the Center for Shared Decision Making would be approximately $200,000 to $250,000 per year, including salaries/benefits (for a program director and a senior clinical secretary/receptionist); the cost of the space (reception area, office and conference room for patient use and storing decision aid inventory); administrative expenses (office supplies, computers, copier, and postage); and the cost of advertising and public relations.
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Funding Sources

Foundation for Informed Medical Decision Making; Dartmouth-Hitchcock Medical Center
The center has a multiyear grant from the Foundation for Informed Medical Decision Making, which funds distribution of the videos and other materials, compensation for most center staff, and the expenses associated with research based on the patient questionnaire. The Dartmouth Hitchcock Clinic provides office space for the center, one administrative position, and operational support (e.g., copying, mailing). Blue Cross Blue Shield of New Hampshire provided initial funding for development of the center.end fs

Tools and Other Resources

The Center for Shared Decision Making offers free toolkits on various topics, including starting a shared decision making center, a decision support toolkit for primary care, a decision support toolkit for specialty care, and training materials for developing shared decision making as a clinical skill. These resources are available at: http://patients.dartmouth-hitchcock.org/shared_decision_making.html.

The center also offers free toolkits for providers by specialty. Guidelines and tools for integrating decision support into clinical care for women newly diagnosed with early stage invasive breast cancer, DCIS, or considering breast reconstruction are available at: http://med.dartmouth-hitchcock.org/csdm_toolkits/specialty_care_toolkit.html.

The Ottawa Personal Decision Guide is available at: http://decisionaid.ohri.ca/decguide.html

Tools and materials from the Foundation for Informed Medical Decision Making are available at: http://www.informedmedicaldecisions.org/

Adoption Considerations

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Getting Started with This Innovation

  • Identify a clinical champion: Integrating shared decision making into clinical care will be much easier if a practicing physician champion supports the effort and serves as an ongoing clinical presence in the area in which the model is being integrated.
  • Obtain administrative and team buy-in and support: Ensure that unit administrators, clinical team members, and staff believe in the value of shared decision making and are willing to engage with patients in this way.
  • Begin with specialty care: Experience suggests that it may be easier to introduce a shared decisionmaking model into specialty care, where the patient and physician typically make a distinct treatment decision. In contrast, primary care physicians typically treat patients with multiple (often chronic) conditions, making the scope of decision making larger and more complex.
  • Minimize required effort, highlight value to clinicians: Design the process so that physicians do not have to be involved in distributing the decision aids to patients, and ensure that physicians understand that the program requires little or no additional effort on their part. Emphasize to physicians that the program can improve the quality of their patient interactions (because patients will be more informed when they arrive for the initial visit). In addition, show physicians the videos and other decision aids so that they better understand their value.
  • Be flexible when integrating program clinical workflow: To the extent possible, find ways to send the decision aids to patients within existing workflow processes and/or in ways that minimize the effort involved. For example, the materials may be incorporated into existing packets of information already sent to newly diagnosed patients; alternatively, hospitals or clinics may send automated e-mails to staff responsible for mailing them.

Sustaining This Innovation

  • Regularly update clinicians about the program, solicit feedback: For example, the breast program operates a weekly "Tumor Board" during which clinicians meet to discuss cases; center staff make periodic presentations during this meeting. In addition, at a monthly meeting, center staff and the physician champion update participating clinicians about center activities and the results achieved, remind them about the quality and efficiency benefits of the program for their own practices, and ask for feedback.
  • Expect acceptance of program only over time: Although they may be hesitant about the program at first, physicians and surgeons should, over time, become more comfortable with it once they see the quality of the decision aids and how they lead to more meaningful surgeon–patient communications.

Use By Other Organizations

With the help of the Foundation for Informed Medical Decision Making, the University of California San Francisco and Allegheny General Hospital have created similar programs to foster shared decision making in breast cancer care. Through its Breast Cancer Initiative, the foundation’s breast cancer videos are also being incorporated into care at a number of other hospital and clinic sites across the country. In addition, the foundation has funded demonstration projects at 11 hospital and clinic sites where other shared decision making aids are being integrated into primary care/internal medicine practices.

Additional Considerations

  • Consider expansion to other areas: A similar approach can be used for a variety of other clinical conditions, including prostate cancer, low back pain, total joint replacement, and others, and for decisions related to specific diagnostic tests and screenings. The center maintains an inventory of decision aids in many of these areas; toolkits can be accessed at http://patients.dartmouth-hitchcock.org/shared_decision_making/decision_aid_library.html.

More Information

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Contact the Innovator

Dale Collins Vidal, MD, MS
Medical Director, Center for Shared Decision Making at Dartmouth-Hitchcock Medical Center
Director, Center for Informed Choice at the Dartmouth Institute
One Medical Center Drive
Lebanon, NH 03756-0001
Phone: (603) 650-5530
E-mail: dale.collins.vidal@hitchcock.org

Innovator Disclosures

Dr. Vidal has not indicated whether he has financial interests or business/professional affiliations relevant to the work described in this profile

References/Related Articles

Dartmouth-Hitchcock Medical Center’s Center for Shared Decision Making Web site: http://patients.dartmouth-hitchcock.org/shared_decision_making.html

Collins ED, Moore CP, Clay KF, et al. Can women with early-stage breast cancer make an informed decision for mastectomy? J Clin Oncol. 2009;27(4):519-25. [PubMed]

Butcher L. Shared decision-making aids improving, winning support among both patients & physicians for treatment choices. Oncology Times. 2008:30(10):23-6. Available at: http://journals.lww.com/oncology-times/Fulltext/2008/05250
/Shared_Decision_Making_Aids_Improving,_Winning.7.aspx


Hegel MT, Moore CP, Collins ED, et al. Distress, psychiatric syndromes, and impairment of function in women with newly diagnosed breast cancer. Cancer. 2006;107(12):2924-31. [PubMed]

Whelan T, Levine M, Willan A, et al. Effect of a decision aid on knowledge and treatment decision making for breast cancer surgery: a randomized trial. JAMA. 2004;292(4):435-41. [PubMed]

O'Connor AM, Llewellyn-Thomas HA, et al. Modifying unwarranted variations in health care: shared decision making using patient decision aids. Health Aff (Millwood). 2004;Suppl Web Exclusives:VAR63-72. [PubMed]

O'Connor AM, Rostom A, Fiset V, et al. Decision aids for patients facing health treatment or screening decisions: systematic review. BMJ. 1999;319(7212):731-4. [PubMed]

Footnotes

1 Dartmouth-Hitchcock Medical Center. Center for Shared Decision Making. About Shared Decision Making. Available at: http://patients.dartmouth-hitchcock.org/shared_decision_making/about_shared_decision_making.html
2 Interview with Kate Clay, March 29, 2010.
3 O'Connor AM, Rostom A, Fiset V, et al. Decision aids for patients facing health treatment or screening decisions: systematic review. BMJ. 1999;319(7212):731-4. [PubMed]
4 Whelan T, Levine M, Willan A, et al. Effect of a decision aid on knowledge and treatment decision making for breast cancer surgery: a randomized trial. JAMA. 2004;292(4):435-41. [PubMed]
5 Collins ED, Moore CP, Clay KF, et al. Can women with early-stage breast cancer make an informed decision for mastectomy? J Clin Oncol 2009;27(4):519-25. [PubMed]
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Original publication: July 07, 2010.
Original publication indicates the date the profile was first posted to the Innovations Exchange.

Last updated: July 30, 2014.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.

Date verified by innovator: June 09, 2014.
Date verified by innovator indicates the most recent date the innovator provided feedback during the annual review process. The innovator is invited to review, update, and verify the profile annually.