Despite a proliferation of palliative care services and rapidly growing evidence that palliative care increases quality and length of life, patients remain uninformed about its nature and benefits. Palliative care is specialized medical care for patients with progressive, advanced disease that offers relief from the pain, symptoms and stress of serious illness. The purpose of this study is to test a psycho-educational intervention intended to improve patients'knowledge of palliative care and to facilitate its timely integration into self-management (SM) of their breast cancer.
Our specific aims are: 1) to evaluate the effects of the intervention on breast cancer patients'knowledge of palliative care;2) to examine preliminary effects of the intervention on patients'feelings (self-efficacy, anxiety, depression, uncertainty), and behaviors (goals of care conversations, role in SM, communication skills, management of transitions, health care utilization);and 3) to evaluate the feasibility and acceptability of the proposed protocol. An exploratory aim is to investigate the extent to which demographic and clinical factors moderate the effects of the intervention, with emphasis on differences in use and outcomes among minority participants. Our preliminary work has shown the intervention to be efficacious in improving both knowledge of palliative care and SM among patients with metastatic breast cancer. These data provide strong evidence for conducting a pilot RCT in anticipation of a large RCT under an R01 mechanism. The intervention, Managing Cancer Care: A Personal Guide (MCC), consists of seven printed modules: Managing Your Symptoms;Managing Your Care and Setting Goals;Care Options;Talking With Your Health Care Providers;Talking With Your Family and Friends;Managing Transitions;and Acting Confidently During Uncertainty. The modules teach daily SM activities that help to maintain health and quality of life in the presence of physical, psychological and social vulnerabilities. Using a magazine format, the modules include key information about each topic, worksheets and other means of personalizing content, "conversation starters" to facilitate communication with family caregivers and providers, and targeted links to local and internet resources, among other features. The MCC will be tested with patients with Stage I-IV breast cancer at baseline, one, and three months following enrollment. The intervention group will receive the MCC, and the attention-control group will receive a symptom management booklet. This innovative research can help to establish palliative care as a mainstay of SM interventions that target serious, progressive illnesses. The intervention furthers the NINR Strategic plan to promote quality of life for patients by providing practical information, tools and communication strategies to reduce physical and psychological burden, and to enable informed and confident SM of the complex issues underlying care options.
It is challenging for patients with breast cancer, their family caregivers, and providers to make choices that include palliation alone or in combination with potentially curative treatment. Any of these parties may lack the knowledge or inclination to communicate about palliative care, and although several educational programs on palliative care for providers exist, there are no such programs for patients. The proposed intervention fills this gap by giving patients the information, skills, and confidence to better self-manage their breast cancer.