This review demonstrates that the [quality of life] research is clear, but the application is poor. We know how to help patients cope, how to inform them, and how to perform the services they need. But the resources to do so and the broader recognition of those needs are still lacking. (Musa Mayer, Patient Advocate, 2014)
- Patients with metastatic breast cancer have unique emotional, physical, and psychosocial needs. According to research findings, these needs have not changed during the last decade. Needs of minority and poor populations living with the disease have not been fully addressed in research or patient surveys.
- The majority of metastatic breast cancer patients experience increasing emotional distress, which escalates as physical symptoms increase. Depression and anxiety are quite common, yet most patients don’t receive mental health benefits.
- Most metastatic breast cancer patients initially report adequate emotional support from friends, family, and community, but many feel isolated by the overall experience of the disease including in the breast cancer community.
- Many metastatic breast cancer patients don’t receive adequate information from health care providers (HCPs) to enable them to understand the disease and its treatments. Patients’ often have a poor understanding of the nature of the disease and the goals of their treatment; sadly, 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. Patients also report confusion about reliable sources of information.
- Most patients suffer multiple symptoms of the disease and side effects of treatment that disrupt their lives. The most common are fatigue, pain and sleep problems.
- Financial hardship is a common issue for families dealing with the disease, and many patients do not realize they will likely qualify for Social Security Disability benefits or Medicare. Other patient and family needs may include transportation to treatment and home, shopping and childcare, disability and insurance applications, and various work-related issues.
- A significant number of metastatic breast cancer patients report they are not receiving the help they need to address their physical symptoms, the side effects from treatment, and the accompanying emotional distress. Better communication between patients, caregivers and providers and better access to supportive and palliative care are clearly needed.
- Individualized information for patients about their particular metastatic breast cancer diagnosis plays a critical role in their informed participation in treatment decision making. This information is also important in helping patients cope with diagnosis and treatment as it reduces their feelings of uncertainty, lack of control, and overall distress.