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Introduction

As patients live longer with MBC, quality of life becomes an increasingly important focus.
Targeted treatment options and advances in supportive care are transforming MBC from a
terminal illness associated with short survival into a disease many patients are living with over
longer periods of time. Although median survival is still widely cited in the range of 2 to 4 years,
many patients with ER+ and HER2+ MBC are living much longer. The most recent published data
from SEER registries report 5-year survival of newly diagnosed de novo MBC (breast cancer
that is already metastatic at the time of first diagnosis) to be 24.3% (ranging from 13.7% for black
women over 50 years of age to 32.9% for white women under 50 years of age) [30] . Because of
trends toward longer survival, some have used the word “chronic” to apply to MBC, but many
patients and advocates take exception to this overly-optimistic term, believing that it trivializes
the nature of what remains a deadly disease.

The lengthened survival of MBC patients has had an impact on quality of life research.
Psychosocial researchers are now concerned with more than just end-of-life issues, and
“palliative care” has been repurposed earlier in the course of disease, to be initiated with
metastatic diagnosis [31] .

Background on Quality of Life Research

Quality of life is a multidimensional concept, consisting of physical, emotional, social, and
cognitive functioning, including the impact of disease symptoms and treatment side effects
[32] . Over the past decade, MBC patients’ voices are being heard more frequently through
support and advocacy organizations, through surveys, and in quality of life research that
increasingly incorporates patient-reported outcomes.

Historically, the field of psycho-oncology, which addresses the mental, social, and emotional
burden of cancer, has been hindered by long-standing societal attitudes relating to not only
Oncology fear of cancer, especially metastatic disease, but also the stigma associated with mental
researchers illness [33] . Beginning in the 1970s, behavioral medicine began to develop models of how
and key opinion
leaders have patients cope with and adapt to living with serious physical illness and disability and to quantify
issued a strong call psychosocial issues so that they could be reliably measured. This paved the way to broader
for treating the use of symptom assessment, studies of unmet patient needs, and screening for psychosocial
patient as a whole distress—not only in research but also in standards of care for patients. For example, National
person, rather than Comprehensive Cancer Network guidelines now recommend the incorporation into standard
merely as a disease care of an instrument that measures “distress,” a term chosen because it is believed to be less
or a cluster of stigmatizing than terms like “depression” and “anxiety” associated with mental illness [34] .
symptoms.
In 2007, an Institute of Medicine (IOM) panel examined psychosocial issues for cancer patients
and issued recommendations [35] , noting the presence of anxiety and depression, the lack
of information available to patients to help them manage their illness, and an absence of
resources to address these issues. Better communication between patients and providers,
routine assessment of needs, patient engagement, and development of care plans were among
the IOM recommendations.

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