Although most Americans wish to die peacefully at home, many die in pain and in the hospital. A quarter of Medicare dollars ? over $100 billion - is spent for patients in their last year of life many are cancer patients. In brief, there is a desperate need for higher quality, more affordable, better patient-centered care for severely ill and dying patients. Effective palliative care for dying and severely ill patients meets this need. Additionally, improvements in the quality of US health care have not equally benefitted low income and minority patients, who remain more likely to have worse health care experiences and outcomes across the spectrum of clinical settings and diseases. Patient navigator programs, in which lay health workers help patients navigate the system, have shown promise for improving quality of care among specific patient populations, but are not widely implemented due to cost and disease-specific content. A less costly, more broadly applicable program would have the potential to improve quality and outcomes for a larger population. The long-term objective of the K08 candidate, Fabian Johnston, MD, MHS, is to improve health care quality, experiences and outcomes for underserved patients by developing and evaluating systems-oriented, family- engaged interventions with potential for broad population impact. This goal is consistent withAHRQ, NCI, and PCORI, priority areas of improving implementation of models of care, utilization of stakeholder engagement, reduction of disparities and improved use of palliative care. To achieve his objective, Dr. Johnston will undertake didactic and experiential training to improve knowledge and skills in four areas: (1) patient navigation; (2) participant-engaged program development and research; (3) comparative effectiveness and stakeholder engagement; and (4) dissemination and implementation science. Dr. Johnston has assembled a mentorship team with expertise in health care quality research, disparities, patient navigation, palliative care, stakeholder engagement and participant-engaged research, to ensure completion of the proposed research and training and successful transition to independence. Dr. Johnston proposes three sequential, innovative projects that build upon his training goals. These projects will contribute to the development and pilot evaluation of a culturally tailored navigation program for African American patients with advanced solid organ malignancies, targeted to the advance care planning, pain management, and hospice referral.
The specific aims are: (1) to collaborate with key stakeholders to develop a targeted patient navigation program; (2) to pilot test the culturally tailored patient navigator intervention; and (3) toassess the feasibility, acceptability, cost, and impact of patient navigation as assessed by a vanguard randomized trial among African American patients with advanced malignancies. This proposal is novel in its application of patient navigation to patients in need of palliative care; and in its use of stakeholder engagement to aid in adaptation of navigation into a briefer, less costly intervention to facilitate dissemination.
Improvements in the quality of US health care have not equally benefitted low income and minority patients, who continue to receive lower quality health care and have worse outcomes than other ethnicity groups. While end-of-life care is inadequate for most seriously ill persons, evidence suggests that while cultural preferences are similar, outcomes are not and that minorities are less likely to complete an Advance Directive, less likely to have their pain adequately managed, and less likely to use hospice services. Finding a way to address these disparities is an important, even critical goal. The overall goal of this proposal is to improve hospital outcomes, experiences, and quality of care for low income and minority patients with advanced malignancies by developing a targeted navigation program with potential for broad dissemination and population impact.
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