Appendix 5: 13 Surveys Completed by 7939 Respondents Living with MBC Survey Name Date Sponsor Method N Needs Assess. QOL \ S/SE Work Psycho-social Support/ Coping Finance/Insurance Tx Choices Tx Info Med. Comm. Med. Satis. Stigma Clinical Trials Silent Voices: Advanced (Metastatic) Breast Cancer Needs Assessment Survey [1, 2] 2006 Living Beyond Breast Cancer Online and, later,on paper 618 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ BRIDGE Survey: Identifying the Unmet Needs of the MBC Community [3, 4] 2009, 2010 Pfizer, with various support organizations Interviews; Harris Inter- active, in 13 countries 1342 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ A pan-European Survey of Patients with MBC [5] 2011 Eisai; Imperial College, London Online 230 ✓ ✓ ✓ ✓ Key Support and Lifestyle Needs of MBC Patients [6] 2011 METAvivor Online 789 ✓ ✓ ✓ ✓ ✓ ✓ Preferences of Patients with MBC [7,8] 2011 Research Advocacy Network (RAN), Department of Defense, Breast Cancer Research Program Center of Excellence Online 400 ✓ ✓ HER2+ MBC Patient Experiences on Treatment in the Biologic Era [9] 2011 Genentech with various support organizations Online 185 ✓ ✓ ✓ Metastatic Breast Cancer in Canada: The Lived Experience of Patients and Caregivers [10] 2012 Canadian Breast Cancer Network and RETHINK Breast Cancer Online 87 ✓ ✓ ✓ ✓ Informational Needs and QOL in 1st Year MBC [11] 2012 Dana Farber Embrace Trial On paper 52 ✓ ✓ ✓ ✓ Impact of Toxicity on Patient Treatment Choices for MBC [12] 2012 RAN, Genentech Online 551 ✓ ✓ Count Us, Know Us, Join Us International Survey [13] 2013 Novartis with various breast cancer organizations and Harris Interactive Online International 1273 ✓ ✓ ✓ ✓ ✓ ✓ ✓ Control of Symptoms and Side Effects in MBC [14] 2013 AdvancedBC.org Online 585 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ Surveying Young Women with MBC [15] 2013 Young Survival Coalition Online 329 ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ Cancer Experience Registry[16, 17] 2014 Cancer Support Community Online 909 so far ✓ ✓ ✓ ✓ ✓ ✓ Needs Assess. = needs assessment for services QOL S/SE = Quality of life, symptoms, and side effects Work = employment, disability, financial support Psychosocial = emotional distress, mental health services Finance/Insurance = financial issues and health insurance coverage Support/Coping = sources of emotional support/coping mechanisms Tx Choices = treatment decision making, access issues Tx Info = information seeking, patient education Med. Comm.= communication and relationship with health care providers Stigma = experience of social isolation, avoidance, stigma Clinical Trials = clinical trials participation