Patient Activation and Palliative Care among Hispanics/Latinos with Metastatic Cancer

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Robust evidence demonstrates that early integration of palliative care in patients with metastatic cancer improves outcomes throughout the disease course by reducing symptom burden and increasing health-related quality of life (HRQoL) and satisfaction with care. Early palliative care also increases hospice enrollment and reduces aggressive treatments and admissions to the ED and ICU at the end of life. Early integration of palliative care concurrently with disease-modifying treatments in patients with metastatic cancer is now recommended by the American Society of Clinical Oncology and National Comprehensive Cancer Center Network. However, most patients still only receive palliative care late in the disease continuum, at or near end of life, and significant disparities persist in access to palliative care. Hispanic/Latino patients with metastatic cancer are less likely to receive palliative care and have worse HRQoL and symptom burden than non-Hispanic/Latino White patients. Hispanics/Latinos also are more likely to experience significant challenges to patient activation, including low health literacy, language barriers, and structural and perceived discrimination. Little is known about how to effectively activate patients and families so that they are empowered participants in conversations about palliative care and no previous study has developed a patient activation intervention for Hispanics/Latinos with metastatic cancer. The overarching goal of this proposal is to: a) identify barriers and facilitators to patient activation in Hispanic/Latino patients with metastatic cancer, and; b) develop an individualized, culturally-adapted intervention that increases patient activation and facilitates early integration of palliative care. We will use an innovative approach that embeds our intervention within the healthcare system and incorporates EHR-integrated systematic symptom monitoring. This approach allows us to tailor our patient activation intervention based on patients’ symptom profile and to help patients and providers center discussions of palliative care on patients’ unique care needs. In order to increase patients’ preparedness and engagement in conversations about palliative care, we will use a web-based platform to deliver a psychoeducational resource that provides accessible, easy- to-understand information about palliative care (individualized based on symptom profile) and patient activation tips. The aims of this mixed-methods study are: Aim 1) identify barriers and facilitators to patient activation and early integration of palliative care through patient and provider focus groups (N=20 each); Aim 2) create an individualized, culturally-adapted patient activation intervention and conduct patient usability testing (N=10); and Aim 3) evaluate the effect of our intervention on proximal outcomes in the early phases of palliative care introduction and referral, including HRQoL, patient-provider communication, shared decision-making, and beliefs/attitudes regarding palliative care (N=50). The impact of this study will be to empower Hispanic/Latino patients in conversations about palliative care and to develop a novel patient activation intervention that can be tested in a future, full-scale randomized controlled trial.