Project name:
Survivor Stories: Impact on Cancer Patients’ QOL and Follow-up Care
Project Overview and Specific Aims:
Disparities in incidence and mortality between African Americans and Caucasians for a number of cancers have been well documented. While incidence rates are lower among African American women overall, African American women who are diagnosed with breast cancer tend to be diagnosed with more advanced-stage disease. Mortality from breast cancer is higher among African American women compared with Caucasian women. Even within stage, mortality rates are higher for African American women. Studies suggest that breast cancer patients do not elect or receive first line treatment meeting National Comprehensive Cancer Network (NCCN) standards. This study builds on previous work in St. Louis to overcome barriers to access to breast screening, identifying and addressing factors associated with access to care once diagnosed, and factors contributing to delay in diagnosis and completion of therapy.
We propose to evaluate in a randomized controlled trial, an innovative cancer communication strategy to help African American breast cancer patients cope with a variety of challenges during and after treatment and to better adhere to recommended treatment guidelines and follow-up care. Patients randomly assigned to the intervention arm of the trial will have access to a tablet (laptop) PC on which they will browse an archive of 1-3 minute videotaped survivor stories about five topics: coping, relationships, experiences with the health care system, follow-up care, and quality of life (QOL) living with breast cancer. Patients will have the laptop for two weeks after enrollment in the study, and again at 6 and 12 months. Patients in the control arm will receive usual care. The survivor stories were videotaped and collected as part of the Living Proof study in CECCR I. We will address the following hypotheses:
Specific Aim 1:
Determine whether and to what extent African American breast cancer survivor stories affect various aspects of QOL, depressed mood, concern about recurrence, information sharing and perceived informational social support among African American breast cancer patients who are completing or have recently completed primary treatment.
Hypothesis 1: Women in the intervention group will report greater QOL, information sharing and informational social support and lower levels of depressed mood and concern about recurrence compared with women in usual care.
Specific Aim 2:
Determine whether and to what extent African American breast cancer survivor stories affect African American breast cancer patients’ adherence to recommended surveillance mammography and prescribed hormone therapy. (e.g., tamoxifen and/or aromatase inhibitors).
Hypothesis 2: Women in the intervention group will be more likely to have received at least one surveillance mammogram at the two-year follow-up compared with women who receive usual care alone.
Hypothesis 3: A higher portion of women in the intervention group will still be taking hormone therapy at the end of the study compared with women in usual care alone.
Specific Aim 3:
Determine whether watching different story topics, identification with storytellers and engagement with the stories mediate the effects of exposure to stories on QOL and adherence to recommended surveillance mammography and prescribed hormone therapy (e.g., tamoxifen and/or aromatase inhibitors).
Hypothesis 4: Women in the intervention group who report greater identification with storytellers or greater engagement with the stories will report better QOL and greater adherence to recommended surveillance mammography and hormone therapy than women who do not.
Outcomes:
This study will determine the impact of “Survivor Stories on: (1) quality of life; (2) adherence to surveillance mammography; and (3) use of tamoxifen or other endocrine therapy, as appropriate.
Intervention:
This will be a randomized controlled trial of the effects of survivor stories on clinically important outcomes of African American women being treated for breast cancer at the Siteman Cancer Center; 220 women will be randomized to receive either usual care plus survivor stories or usual care alone. Women in the intervention arm will be given the “Survivor Stories” Tablet to take home for two weeks. Tablet-usage data is automatically logged and will be downloaded when the “Survivor Stories” Tablet is returned.
Project staff:
Graham Colditz, PI
Donna Jeffe, Co-PI
Julie Margenthaler, Investigator
Matthew Kreuter, Investigator
Ricardo Wray, Investigator
Yan Yan, Statistician
Maria Perez, Project Director
Julianne Sefko, Research Patient Coordinator
Deb Kziasek, Research Patient Coordinator
Contact information: Maria Perez at mperez@dom.wustl.edu or 286-1917
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