75 Chapter 4: MBC Information and Support Services—an Analysis of MBC Alliance Member Efforts Katherine Crawford-Gray2 2 Metastatic Breast Cancer Alliance Abstract Information and support services are essential in helping patients manage common aspects of living with MBC. Methods: Staff and volunteers of 16 nonprofits were interviewed to identify gaps and duplications in member services. The most recently available Form 990s, as well as research reports, surveys, scientific roundtables, posters, and services were also reviewed for MBC-specific content. Information and support services provided on the websites of the nonprofits, as well as 5 pharmaceutical members, were assessed for quality, breadth, and depth of MBC information. Member websites were also assessed for attractiveness to the user, 13 aspects of MBC information, evidence supporting the MBC information provided, recency of updates, ease of navigation, and use of social media tools. Thirteen organizations were sent an online survey about helpline/hotline services. Finally, 10 publicly available surveys and 4 proprietary reports provided by Alliance members were reviewed. Results: While the majority of the nonprofit members focus on meeting the information and support needs of the breast cancer community, not enough attention is paid to the MBC patient populations. Print and electronic material provided by the Alliance members requires that patients have relatively high health literacy and be Internet savvy. There are no dedicated helpline services for MBC patients; conferences and in-person networking events tend to be in large cities. Opportunities to create community through social media are very limited. Nonprofits report their services are underutilized and there is a lack of data collected on who is using the services. Gaps in information from members include lack of detailed information on the latest treatments, quality of life, palliation, and advanced directives and end-of-life care. Conclusions: Alliance members provide some level of high-quality information and support services to MBC patients and their families. However, because Alliance members offer so much general information, it is difficult for individual patients to find what they need. Organizations must consider how to reach other subgroups of the MBC patient population. Introduction Information and support services are essential in helping patients manage common aspects of living with MBC. MBC patients experience psychosocial distress, particularly depression and anxiety; require emotional support from family, friends, community, and other people with the disease; need information to help facilitate and empower decision making around treatment and end of life; deserve relief of physical symptoms, both during treatment and end of life; and must resolve practical issues with work, insurance, and finance. (These issues are addressed in detail in Chapter 3.)