Lessons Learned from Engaging Latinos in a Palliative Oncology Research Program (FR477)

Abstract

•Recognize disparities in end-of-life care for Latinos with advanced cancer.•Appraise the existing literature describing the psychosocial, cultural, and communication factors that influence illness understanding, decision-making, and end-of-life care among Latinos with cancer.•Describe methods for engaging and collaborating with stakeholders and interdisciplinary team members from palliative care and oncology in a research program on minority patients with serious illness. Latinos with incurable cancer often receive palliative chemotherapy without understanding that it is unlikely to cure. Such misconceptions are more prevalent among Latinos than Whites, and may contribute to Latino/non-Latino disparities in end-of-life (EOL) care, such as lower rates of advance care planning, underutilization of hospice, and high rates of hospital and ICU death. Latino advanced cancer patients face formidable cultural, linguistic, and structural barriers to accessing critical information about their disease and treatment options. Nevertheless, interventions to enhance Latinos’ understanding and engagement in treatment decision-making are few and underdeveloped. Bolstering communication between oncologists, Latino patients, and caregivers holds promise to improve understanding and quality in advanced cancer and palliative care. In partnership with Latino community members, investigators, and students, we have developed a multimedia, patient-centered intervention supporting palliative chemotherapy education, tailored to the needs of Latino patients with advanced gastrointestinal malignancies and their caregivers. In an NCI-funded randomized controlled trial (RCT) we seek to determine its impact on Latino patients’ and caregivers’ understanding of chemotherapy risks and benefits, communication satisfaction, treatment choices, and EOL planning. In this concurrent session we will present our systematic literature reviews and focus groups with Latino patients and caregivers to contextualize disparities in end-of-life outcomes for Latinos with advanced cancers. Audience members will be asked to list challenges they face performing cross-cultural palliative oncology research. We will then present our work on this project as an example of how to overcome these barriers. Focusing on the creation of our intervention, the development of tools to measure outcomes, and the design of an RCT, we will review critical topics, challenges, and lessons learned in research involving minority patients with advanced illness: the engagement of stakeholders, the translation of educational and research materials into another language, and the exploration of explanatory models and decision-making frameworks.