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Surveys indicate that although almost all patients value emotional support, the preferred form
of that support varies greatly: from meeting individually with mental health professionals,
to participating in in-person support groups (whether professionally led or not), to semi-
anonymous interactions with online patient communities. In addition, relatively few MBC
patients report being involved with these sources of support, suggesting that many are either
not aware of organized professional and peer support or simply prefer to rely on informal
[3]
support networks within their families and communities . There are certainly some patients
who cope in isolation, either by choice, by circumstance, or because of cultural beliefs; some
view their disease as shameful or as a punishment [62] .

Support for partners or spouses also matters to MBC patients, who are often keenly aware of
the impact of their illness on their families. Some studies indicate that spouses may suffer more
emotional distress than patients, perhaps because of feelings of uncertainty, hopelessness,
and helplessness. Moreover, spouses are likely to receive significantly less emotional support
from family and friends than patients [62] . Not surprisingly, mutual spousal support plays a key
role in coping with MBC for both partners [52, 72] .

3. Information

In 2013, an IOM committee reviewing the current state of cancer care described a system
Most MBC patients in crisis and issued an urgent call for change [38] . Patient engagement in healthcare decision-
say they highly value making was identified as a top priority. Such engagement cannot occur, according to the IOM,
information and without patients being adequately informed: “The cancer care team should provide patients
support from patients and their families with understandable information on cancer prognosis, treatment benefits
like themselves and and harms, palliative care, psychosocial support, and estimates of the total and out-of-pocket
that it helps them cope costs of cancer care.” Moreover, the committee stipulated that this information should be
and to feel less alone.
personalized, leading to care plans that reflect the patient’s needs, values, and preferences,
considering palliative care needs and psychosocial support across the entire continuum of
cancer care.

Information is perceived as a primary need by about 75% of MBC patients, as reported in
several large surveys, regardless of nationality [44, 59, 73] . The role of information in helping
patients and families cope has also been well documented in the health care literature [74] .
Information that facilitates decision making about treatment may help patients cope with
uncertainty and loss of control, thus reducing anxiety and depression [46] . Information-seeking
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