The advent of effective antiretroviral treatment for HIV has resulted in an incredible improvement in survival statistics. With this accomplishment has come a marked increase in the number of persons living with HIV/AIDS (PLWHA), with the highest prevalence since the epidemic began of more than 1.2 million. While PLWHA survive longer, they also experience increased burdens of chronic conditions, such as liver disease, heart failure, and diabetes, related to lifestyle factors, treatment side effects, and age. PLWHA are a population at great risk for high symptom burden, impaired coping and social functioning, decreased quality of life, and inadequate end-of-life care. The remarkable shift in attitudes towards HIV, from an inevitably fatal disease to a chronic condition, has been accompanied by a lessening emphasis on symptom management and end-of-life planning. However, while mortality from AIDS-defining conditions has decreased, PLWHA continue to have unaddressed needs for coordinated care, symptom management and proactive advance care planning. Palliative care, focused on comprehensive management of physical, psychological, social, and spiritual needs of persons with incurable, progressive illnesses, is a health service uniquely designed to meet these needs. The overall goal of this research project is to test a model of early palliative care for PLWHA at high risk of mortality and morbidity. This study will first use focus group methods to explore views of PLWHA regarding their needs for symptom management and social support, and their attitudes towards advance care planning and end-of-life concerns. We will then conduct a randomized trial of a novel HIV Navigation Program, whose design will be informed by focus group data. The Navigation Program will be a modification of an existing navigation program that uses trained and experienced volunteers as a core component, offered by a large, comprehensive hospice and palliative care organization.
The specific aims of this study are 1) to identify needs and preferences for palliative care and advance care planning of PLWHA, in order to tailor an existing Patient Navigation Program to the specific needs of PLWHA and other chronic conditions;and 2) to test the effect of an HIV Patient Navigation Program intervention on outcomes of quality of life, symptom burden, coping ability, and advance care planning;and 3) to determine if effectiveness of the HIV Patient Navigation Program intervention differs by age, gender, ethnicity, education, income level, and level of palliative care service need. Because of the increasing prevalence of HIV coexisting with chronic conditions, there is an urgent need to assess palliative care needs and preferences of PLWHA and design effective interventions to meet these needs. This interdisciplinary study will test, at the community level, a novel health service designed to meet the unique needs of chronically ill PLWHA, and improve and support advance care planning. Results from this study will increase understanding of who are the PLWHA at highest risk for need of palliative services and provide a model for providing early palliative care support for PLWHA.

Public Health Relevance

The proposed research is a randomized trial of an HIV Patient Navigation program to test the effectiveness of early palliative care on outcomes of quality of life, symptom assessment, coping ability, and advanced care planning. This study will increase our understanding of persons living with HIV/AIDS (PLWHA) who are at highest risk for need of palliative care services and provide a model for provision of early palliative care support for adult PLWHA with chronic comorbidities. Attention to palliative care needs of persons living with HIV/AIDS who have other chronic conditions is essential because of the increasing prevalence of HIV and the rise in chronic diseases. This study will test a model of early palliative care that can be replicated to improve HIV palliative care in this highly vulnerable population.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Research Project (R01)
Project #
Application #
Study Section
Special Emphasis Panel (ZNR1-REV-T (12))
Program Officer
Hardy, Lynda R
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
Case Western Reserve University
Schools of Nursing
United States
Zip Code
Slomka, Jacquelyn; Prince-Paul, Maryjo; Webel, Allison et al. (2016) Palliative Care, Hospice, and Advance Care Planning: Views of People Living with HIV and Other Chronic Conditions. J Assoc Nurses AIDS Care 27:476-84