Improving Psychosocial Quality of Life for Women with Advanced Breast Cancer

Background: Breast cancer is the second leading cause of cancer death for American women, with over 40,000 deaths annually. Despite advances in treatment, about one-third of all women who have been treated for invasive breast cancer will undergo a metastatic recurrence and die of this disease. Although incurable, metastatic breast cancer is treatable, and a patient may live for several years after her diagnosis. In several clinical contexts, evidence is available demonstrating improved outcomes, including better treatment adherence, higher quality of life, and reduced decisional conflict, when patients are more actively involved in their care. However, disparities exist, with minority patients and those of lower socioeconomic status engaging in the visit less than others. Encouraging participation during clinical encounters for women with an early stage breast cancer diagnosis has been well-studied, but far less attention has been directed towards enhancing quality of life for women with metastatic disease through increased patient participation. The proposed study focuses specifically on the communication and decision making processes among patients with a new diagnosis or progression of metastatic breast cancer. Objective/Hypothesis: The overall study objective is to improve psychosocial quality of life among women with metastatic breast cancer by promoting patient participation during clinical encounters through use of a Patient Participation Aid (PPA). Specific Aims: (1) Assess the effectiveness of the PPA to increase patient involvement during clinical encounters. (2) Evaluate the effectiveness of the PPA to improve patient psychosocial outcomes. (3) Explore if the effect of the PPA varies by patients’ literacy skills. Study design: We will conduct a randomized controlled trial to evaluate the PPA at two cancer centers that serve clinically similar patient populations. We will video record visits between women with a new diagnosis or progression of metastatic breast cancer. To address Aim 1, recordings will code for number of agenda items initiated by patients; number of questions asked by patients; and discussion of patient preferences. Aim 2 will be addressed by measuring psychosocial quality of life, ratings of medical care, and decisional conflict. Psychosocial quality of life, as measured in this study, refers to a woman’s ability to engage in and satisfaction with her social and emotional life. Cancer relevance: The Patient Participation Aid (PPA) uses a simple, straightforward design to educate patients on their role in cancer care and increase their involvement in clinical encounters by modeling - through text and images - how one can: 1) set the visit agenda, 2) formulate and ask questions, and 3) assert personal preferences. The PPA was specifically created with feedback from women with metastatic disease, and it can be easily disseminated prior to clinical encounters for informing and empowering patients. The PPA has the potential to increase patient involvement in care and increase patient psychosocial quality of life for women with metastatic breast cancer. Poor and underserved communities share a disproportionate burden of the morbidity and mortality for metastatic breast cancer, as both low socioeconomic status and being African American are independent risk factors for presenting with and dying from late-stage breast cancer. Women with metastatic disease have been underrepresented in psychosocial and behavioral research on breast cancer and cancer decision making. For these women, whose disease is