Your Health- Breast Health

Your Health- Breast Health-
Collaborative Care
Information for Our Community

Tools to Improve Breast Cancer Treatment Decision-Making for Lesbians

Author:
Caryn Aviv, PhD, The Program for Collaborative Care, University of California, San Francisco, Carol Franc Buck Breast Care Center

Decision-Making Process

Treatment Decision Making in Breast Cancer is Difficult

Patients experience confusion about options, voluminous and questionable information available on the internet, conflicting opinions.
Physicians are busy, managed care shortens length of time for discussion, vast amount of clinical data difficult to manage, synthesize, and convey to patients.

Making Emotionally Charged Decisions

Cancer and treatment create changes in women’s bodies, everyday life choices, and future risk of cancer.
Families often play a significant role in considering choices and supporting patients through treatment.
Physicians cope with many anxious, scared patients - which can lead to burn-out.

Lesbians Face Barriers in Breast Cancer Treatment Decision-Making

Gender, age, and size stereotyping and assumptions about women’s relationships to their bodies.
Invisibility about sexual orientation, fear, and perceived need to remain closeted.
Lack of recognition of partners and families.
Provider insensitivity, homophobia and discrimination.

The Collaborative Care Program

Rationale and Goals

What the Program Provides

Consultations

Consultation Planning

A tested, effective doctor visit preparation technique.
Patients meet 1 hour prior to their appointment with a physician to map out questions and concerns on a Consultation Plan.
Consultation Plans organize patients’ thoughts, feelings, and preferences.

Consultation Planning: How It Works

What Consultation Plans Can Do, and How They Can Help

Highlight patients’ identities, questions, concerns, preferences, and family configurations.
Help patients clarify what’s important to them in this decision.
Help physicians anticipate questions and tailor information to patients’ needs.

Consultation Recording

Important meetings need structure to make decisions and take action.
Meeting facilitation techniques provide structure, roles, and process for collaborative decision-making.
Action happens with explicit agreements, decisions, and identified next steps.

How Consultation Recording Works

Structure: Agendas and Consultation Plans guide the discussion.
Roles: Patients, Physicians, and Consultation Recorders (family, friends, navigators, advocates) participate.
Process: Patients and physicians talk, Consultation Recorder creates a record on a laptop and moves the discussion along.

How the Process Works

Results of the UCSF Collaborative Care Program

The Program and Patient Population at UCSF

1/3 of the Breast Care Center clinic staff are lesbian or queer identified.
Significant lesbian, bisexual, and transgendered patient population in the Bay Area.
1710 new patients seen yearly in clinic, approximately 9100 patient visits per year.
Collaborative Care tools currently used in surgical, neo-adjuvant, and adjuvant settings.
6 medical oncologists, 3 surgeons, and 2 radiation oncologists use the Program’s tools.

Does Consultation Planning Help Patients Prepare? (n=116)

98% of all patients agreed or strongly agreed that Consultation Planning helped them feel more prepared and was worth the time put into it.
99% agreed they would recommend Consultation Planning to a friend facing an upcoming treatment decision.

Does Consultation Recording Help Collaborative Decision-Making? (n=113)

98% of patients agreed or strongly agreed that they were satisfied with the quality of their consultation.
99% said it was easy to voice their questions and concerns.
81% agreed that their consultation was more productive than most of their other consultations.

Expanding the use of Collaborative Care Tools

Collaborative Care Tools Can Translate to Many Settings and Decisions that Lesbians Face

Program Expansion

Training for Bay Area patient navigators, advocates, and community resource centers conducted twice a year.
Consultation Planning and Recording offered in three clinics and three community resource centers across Northern California.

Future Directions for the Program

NCI R01 submitted to test the effect of Collaborative Care on patient satisfaction and anxiety with 400 patients at UC Davis and Ohio State University.
Pilot ethnographic study of 10 UCSF patients to develop decision support in the metastatic setting.
Implementation at San Francisco General Hospital incorporating cultural and sexual diversity models.

References

Aviv, C, Sepucha, K, Belkora, J, Mutchnick, S, Esserman, L. (2001). Using Action Research to Improve Collaboration Between Breast Cancer Patients and Physicians: Creating the Program for Collaborative Care. Research in the Sociology of Health Care. J. J. Kronenfeld. Vol. 19: Changing Consumers and Changing Technology in Health Care and Health Care Delivery.
Belkora, J. (1997). Mindful Collaboration: Prospect Mapping as an Action Research Approach to Planning for Medical Consultations. Engineering-Economic Systems and Operations Research. Stanford, Stanford University.
Doyle, M, Straus, D. (1982). How to Make Meetings Work. New York, Jove Books.
Sepucha, K, Belkora J, Esserman, L, Tripathy, D. (2000). “Building Bridges Between Physicians and Patients: Results of a Pilot Study Examining New Tools for Collaborative Decision-Making.” Journal of Clinical Oncology 18(6): 1230-8.

Acknowledgements

UCSF Carol Franc Buck Breast Care Center: Laura Esserman, Debu Tripathy, Hope Rugo, Debby Hamolsky, Meridithe Mendelsohn, Brian Edlow, Elizabeth Ortega Lau, Mimi Roth
National Collaborative Care Facilitation Group: Jeff Belkora (CBHP), Karen Sepucha (Harvard), Stephanie Mutchnick, Elissa Ozanne (Stanford)