Silent Voices: Information, Support & Practical Services Needs for Metastatic Breast Cancer Patients

LBBC Research
December 19, 2014

Elyse S. Caplan, MA, Living Beyond Breast Cancer; with  Musa Mayer, MS, MFA, and Susan E. Grober, PhD


Information and educational materials, programs and support services targeted to metastatic breast cancer (MBC) patients are scarce and difficult to locate. As the MBC population lives longer, the need for educational materials and support services tailored for this population continues to increase. Living Beyond Breast Cancer (LBBC) developed a 64-question survey to assess the needs of women living with MBC, with the goal of using the findings to fill gaps in programs and services targeted to this underserved population.


The survey was administered online and in print and focused on the MBC population’s use of and preferences for services in three domains: information, support, and practical resources. Of the 697 respondents, 618 people completed the online version; 79 the paper-and-pencil version. Respondents were asked about the type of support services they found helpful, their satisfaction with those providers and organizations where they received services, and their preference for future services, including mode of service delivery.


Differences in information, support and practical services preferences were observed in the 2005 online and paper groups. In 2008, the same survey was conducted using only the paper format to test these observed differences and to promote increased participation among non-Internet users. Differences were again observed. Presentation of these differences will be discussed to raise awareness of topics and methods that will impact the delivery of quality care by oncology social workers working with women and families affected by MBC. A white paper summarizing the 2005 results was also produced.


The difference in results of the 2005 and 2008 surveys highlights the need to customize programs for women living with MBC as well as make these programs accessible, understandable and useful. While more resources are dedicated to breast cancer advocacy than advocacy for any other cancer, very few of those resources are dedicated to learning about and helping women living with metastatic breast cancer. This session uniquely focuses on increasing participants’ level of understanding about the information, support and practical needs of MBC patients and how they prefer to have these resources and services delivered to them.


American Psychosocial Oncology Association, February 2010 (poster)

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