This study aimed to review prior literature and patient survey reports related to metastatic breast cancer (MBC) patients’ quality of life (QoL), needs, and assess extent to which local organizations are meeting them.
(1) Research findings of > 150 published, peer-reviewed research articles including quantitative and qualitative studies of MBC patients and their families, were summarized around the realities of living with MBC. (2) 13 surveys of ∼8,000 MBC patients were examined for common concerns. (3) Desk research analysis of leading non-profits’ patient advocacy, research, education and support (n = 16); and interviews with leadership about services for patients (n = 16).
The extensive research base around MBC QoL issues was summarized into 6 categories: psychosocial distress; emotional support; information about the disease, its treatment, and resources; communication and decision making about care; relief of physical symptoms; and practical concerns. Sources of emotional support, individual and group psychotherapy, and counseling, as well as adequate information about the disease, its treatments, and methods to alleviate symptoms and side effects have been shown to be useful in helping patients cope with MBC. However, patients are typically not well informed in areas required for decision making about their care, and patient–clinician communication can be difficult. MBC symptoms and side effects of continuous treatment - fatigue, sleeping difficulties, and pain - and emotional distress interfere with daily life; supportive and palliative care is often insufficient. While the majority of the major local breast cancer advocate organizations focus on meeting the support needs of the breast cancer community, not enough attention is paid to the MBC patient population. Gaps in information include lack of detailed information on latest treatments, QoL, palliation, communication with health care providers, and advanced directives and end-of-life care.
While QoL issues for MBC patients/caregivers are well understood, the resources and commitment to address these issues are still lacking. Targeted information and support services addressing QoL needs are as necessary to patients as medical treatments.
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Has not received any funding.
The author has declared no conflicts of interest.