Page 12 - MBCA_FULL REPORT_FINAL_FOR_WEB

Quality of Life for MBC Patients and their Families

Patients with MBC have unique emotional, physical, and psychosocial needs, and these have
not changed over the last decade of academic research and patient surveys. The needs of
minority and poor populations living with MBC have not been fully addressed in research or
patient surveys.

• Emotional distress, experienced by a majority of MBC patients, is associated with
Some estimates are increasing physical symptoms. Depression and anxiety are common, yet patients
that as many as one receiving mental health services are a minority; many methods exist for addressing
third of MBC patients psychosocial distress, most of which are underutilized.
suffer from mood
disorders such as • Most patients initially report adequate emotional support from friends, family, and
major depression community, but many feel isolated by the experience of the disease; social stigma is
and anxiety, and one felt by half of MBC patients, especially within the breast cancer community.
quarter experience
mild depression. • Individualized information about MBC is a critical factor for informed participation
in treatment decision making. Information also plays an important role in coping by
reducing uncertainty, lack of control, and distress.

• Many MBC patients do not receive adequate information from health care providers
Fatigue is by far the (HCPs) to enable them to understand the disease and its treatments so they can
most common physical make informed decisions. Patients’ understanding of the nature of the disease and
symptom reported by
MBC patients, occurring goals of treatment is often poor; many believe they will be cured. Limitations of time
in 80% or more of those and resources in busy oncology practices may result in poor patient–doctor dialogue,
undergoing treatment. including one-way “doctor-knows-best” communication. MBC patients also report
confusion about reliable sources of information.

• Most MBC patients suffer multiple symptoms of disease and side effects of treatment
that disrupt their lives—most common are fatigue, pain, and sleep problems. Despite
this, half of patients say they are not routinely asked about their symptoms and
Better communication express concern about “bothering” their doctors.
among patients,
caregivers and providers • Financial hardship is a common issue for families dealing with MBC, and many patients
and better access to do not realize they will likely qualify for Social Security Disability benefits or Medicare.
supportive and palliative
care are needed. Even, if eligible, the 2-year waiting period for Medicare represents a financially
vulnerable time; many file for bankruptcy and face lower standards of living. Other
practical needs may include transportation to treatment, home, shopping and child
care, disability and insurance applications, and work-related issues, among others.

• A significant number of MBC patients report they are not receiving the help they need
to address their physical symptoms, side effects from treatment, and emotional
distress. Better communication among patients, caregivers and providers and better
access to supportive and palliative care are clearly needed.

• Action and initiatives based on the findings from surveys of patients’ needs, and other
research, are lacking.

12