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Chapter 4: MBC Information and

Support Services—an Analysis of

MBC Alliance Member Efforts

Katherine Crawford-Gray 2
Metastatic Breast Cancer Alliance
2

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.)

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