Landscape Analysis

Quality of Life Key Findings

Assessing the Needs of People Living With MBC

Upon our founding in 2013, one of the Alliance’s first task was a comprehensive analysis of the state of metastatic breast cancer research, clinical trials, quality of life, patient needs, and available information and services. Findings were released in a landscape report in October 2014, Changing the Landscape for People Living with Metastatic Breast Cancer, which identified opportunities to close gaps for people living with MBC. The report helped the Alliance choose areas of focus that continue to guide its work today.

Quality of Life

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 increasing physical symptoms. Depression and anxiety are common, yet patients receiving mental health services are a minority; many methods exist for addressing psychosocial distress, most of which are underutilized.
  • Most patients initially report adequate emotional support from friends, family, and community, but many feel isolated by the experience of the disease; social stigma is felt by half of MBC patients, especially within the breast cancer community.
  • 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 (HCPs) to enable them to understand the disease and its treatments so they can make informed decisions. Patients’ understanding of the nature of the disease and goals of treatment is often poor; many believe they will be cured. Limitations of time and resources in busy oncology practices may result in poor patient–doctor dialogue, 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 express concern about “bothering” their doctors.
  • Financial hardship is a common issue for families dealing with MBC, and many patients do not realize they will likely qualify for Social Security Disability benefits or Medicare. 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.

Key Facts

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