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Appendix 5: 13 Surveys Completed by 7939 Respondents Living with MBC

Survey Name Needs Assess. Psycho-social Support/ Coping Finance/Insurance

Date Sponsor Method N QOL \ S/SE Work Tx Choices Tx Info Med. Comm. Med. Satis. Stigma Clinical Trials

Online
Silent Voices: Advanced (Metastatic) Breast 2006 Living Beyond and, later,on 618 ✓
Cancer Needs Assessment Survey [1, 2] Breast Cancer paper ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓

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