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Grant Details

Grant Number: 5R01CA252101-03 Interpret this number
Primary Investigator: Johnston, Fabian
Organization: Johns Hopkins University
Project Title: Dissemination and Implementation of a Community Health Worker Intervention for Disparities in Palliative Care (Decide Pc)
Fiscal Year: 2023


Abstract

SUMMARY Palliative care can reduce physical and psychological symptoms, improve quality of life, and ensure goal- concordant care at the end-of-life for patients with advanced cancer. There are persistent and worsening disparities in end-of-life outcomes for African American patients which are confounded by the lower likelihood of this population to access and receive palliative care. The basis for these disparities are multi-factorial, and at the end of life, barriers include personal or cultural values in conflict with hospice philosophy, a lack of awareness of hospice services, concern about burdening family, economic factors, and/or mistrust of the healthcare system. The addition of individuals to the care team with a nuanced skillset focused on addressing such barriers to care is a promising approach to enhance palliative care uptake. Community Health Workers (CHWs) are non-clinician, culturally competent public health workers whose role is to promote access to services, provide health education, support care delivery, and promote advocacy in underserved populations. CHWs supplement care for patients with advanced chronic diseases, including HIV/AIDS, tuberculosis, and cancer, and their impact on improving care in these settings is well-established. We developed an integrated CHW model – the Dissemination and Implementation of a Community Health Worker Intervention for Disparities in Palliative Care (DECIDE PC) – that utilizes CHWs as care team members to augment palliative care outcomes for underserved patients with advanced-stage illnesses. In DECIDE PC, CHWs are trained to provide advocacy, support, motivation, empowerment, and education regarding palliative and end-of-life care to patients and their caregivers. Our preliminary experience suggests that CHWs can improve palliative care outcomes and improve patient and caregiver satisfaction with care. Our long-term goal is to reduce disparities in palliative care for African Americans with advanced cancer. Integration of CHWs as members of the healthcare team may be an effective means to improve access to and enhance the uptake of palliative care in this population. To explore this, we will conduct a randomized effectiveness-implementation pragmatic trial at four diverse cancer centers to 1. compare the effectiveness of the DECIDE PC intervention versus standard care in improving palliative care outcomes, including quality of life, receipt of quality communication, advance care planning documentation/discussion, and hospice use, and 2. evaluate contextual factors that influence the effectiveness, fidelity, and adoption of the DECIDE PC intervention. We anticipate this work will establish the effectiveness of a CHW-based palliative care intervention in a priority population and generate generalizable knowledge to guide the development and implementation of interventions to increase the use of palliative care services in underserved populations.



Publications


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