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Integrating Early Palliative Care for Patients With HIV: Provider and Patient Perceptions of Symptoms and Need for Services
American Journal of Hospice & Palliative Medicine® 1-6 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114550391 ajhpm.sagepub.com
Sarah Lofgren, MD1, Rachel Friedman, MD2, Rahwa Ghermay, MD1, Maura George, MD1, John Richard Pittman, MD1, Amit Shahane, PhD3, Dorothy Zeimer, MSW4, Carlos Del Rio, MD2,5, and Vincent C. Marconi, MD1,5,6
Abstract Increasingly clinicians are using palliative care to address the symptomatic and psychosocial effects of disease often missed by routine clinical care, termed ‘‘early’’ palliative care. Within an inner-city medical center, we began a program to integrate early palliative care into HIV inpatient care. Patient symptom burden and desired services were assessed and compared to provider perceptions of patient’s needs. From 2010-2012, 10 patients, with a median CD4þ T-cell count of 32.5 cells/mL, and 34 providers completed the survey. Providers ranked their patients’ fatigue, sadness, anxiety, sexual dysfunction, and body image significantly higher than patients it for themselves. Patients ranked medical care, pharmacy, social work, physical therapy, and housing as significantly more important to them than providers estimated them to be. These differences may reflect the fact that physicians often overlook patients’ unmet basic needs. Early palliative care may narrow this gap between providers’ and patients’ perceptions of needs through good communication and targeting barriers, such as housing instability, which are vital to overcome for consistent long-term follow up. Keywords HIV, palliative care, health services, symptom assessment, social services, health services accessibility
Introduction The earlier integration of palliative care services (PCSs) into chronic disease management has become increasingly more common over the last several years. This movement began shortly after the World Health Organization first proposed this new model in 1990.1 This same early PCS model was recommended specifically for diseases such as HIV/AIDS in their 2004 Bulletin on Palliative Care.2 Joint United Nations Programme on HIV/AIDS (UNAIDS) also emphasized this approach while attempting to clarify the misconceptions that PCSs were limited to hospice care. The UNAIDS definition stated that palliative care (PC) ‘‘is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life.’’3 A seminal study by Temel et al in 2010 involving early PC in nonsmall cell lung cancer demonstrated enhanced quality of life, decreased hospitalizations, and prolonged survival.4 While PC has been traditionally associated with cancer care, practitioners who provide care for patients with a variety of chronic diseases have begun to utilize PCS in conjunction with etiology-specific treatment.5-8 Undoubtedly combination antiretroviral therapy (cART) is the cornerstone of HIV care; however, the associated
psychosocial challenges, spiritual concerns, and high symptom burden associated with HIV disease cannot be underestimated and must be addressed in order to optimize care.9,10 If these issues are not adequately addressed during initial visits with a patient, the likelihood of establishing an effective relationship with the provider declines considerably.11 Given that certain regions of the United States are failing to effectively contain the HIV epidemic, innovative strategies to improve
1 Department of Medicine, Emory University School of Medicine, Atlanta, GA, USA 2 Division of Infectious Diseases, Department of Medicine, Emory University School of Medicine, Atlanta, GA, USA 3 Department of Psychiatry and Behavior Sciences, Emory University School of Medicine, Atlanta, GA, USA 4 Department of Social Work, Grady Health System, Atlanta, GA, USA 5 Hubert Department of Global Health, Rollins School of Public Health of Emory University, Atlanta, GA, USA 6 Department of Internal Medicine, Division of Infectious Diseases, Atlanta Veterans Affairs Medical Center, Atlanta, GA, USA
Corresponding Author: Sarah Lofgren, MD, 6401 France Ave S, Edina, MN 55435, USA. Email: [email protected]
Downloaded from ajh.sagepub.com at TULANE UNIV on January 26, 2015
American Journal of Hospice & Palliative Medicine®
2 Table 1. Individuals With HIV Who Were Eligible for Hospice.
Table 3. Services Assessed.
Malignancies (with the exception of cutaneous Kaposi sarcoma or 10% body weight in 6 months End-stage cardiac disease defined as New York Heart Association class IV heart failure, EF 1.5, serum albumin
Integrating Early Palliative Care for Patients With HIV: Provider and Patient Perceptions of Symptoms and Need for Services
American Journal of Hospice & Palliative Medicine® 1-6 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114550391 ajhpm.sagepub.com
Sarah Lofgren, MD1, Rachel Friedman, MD2, Rahwa Ghermay, MD1, Maura George, MD1, John Richard Pittman, MD1, Amit Shahane, PhD3, Dorothy Zeimer, MSW4, Carlos Del Rio, MD2,5, and Vincent C. Marconi, MD1,5,6
Abstract Increasingly clinicians are using palliative care to address the symptomatic and psychosocial effects of disease often missed by routine clinical care, termed ‘‘early’’ palliative care. Within an inner-city medical center, we began a program to integrate early palliative care into HIV inpatient care. Patient symptom burden and desired services were assessed and compared to provider perceptions of patient’s needs. From 2010-2012, 10 patients, with a median CD4þ T-cell count of 32.5 cells/mL, and 34 providers completed the survey. Providers ranked their patients’ fatigue, sadness, anxiety, sexual dysfunction, and body image significantly higher than patients it for themselves. Patients ranked medical care, pharmacy, social work, physical therapy, and housing as significantly more important to them than providers estimated them to be. These differences may reflect the fact that physicians often overlook patients’ unmet basic needs. Early palliative care may narrow this gap between providers’ and patients’ perceptions of needs through good communication and targeting barriers, such as housing instability, which are vital to overcome for consistent long-term follow up. Keywords HIV, palliative care, health services, symptom assessment, social services, health services accessibility
Introduction The earlier integration of palliative care services (PCSs) into chronic disease management has become increasingly more common over the last several years. This movement began shortly after the World Health Organization first proposed this new model in 1990.1 This same early PCS model was recommended specifically for diseases such as HIV/AIDS in their 2004 Bulletin on Palliative Care.2 Joint United Nations Programme on HIV/AIDS (UNAIDS) also emphasized this approach while attempting to clarify the misconceptions that PCSs were limited to hospice care. The UNAIDS definition stated that palliative care (PC) ‘‘is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life.’’3 A seminal study by Temel et al in 2010 involving early PC in nonsmall cell lung cancer demonstrated enhanced quality of life, decreased hospitalizations, and prolonged survival.4 While PC has been traditionally associated with cancer care, practitioners who provide care for patients with a variety of chronic diseases have begun to utilize PCS in conjunction with etiology-specific treatment.5-8 Undoubtedly combination antiretroviral therapy (cART) is the cornerstone of HIV care; however, the associated
psychosocial challenges, spiritual concerns, and high symptom burden associated with HIV disease cannot be underestimated and must be addressed in order to optimize care.9,10 If these issues are not adequately addressed during initial visits with a patient, the likelihood of establishing an effective relationship with the provider declines considerably.11 Given that certain regions of the United States are failing to effectively contain the HIV epidemic, innovative strategies to improve
1 Department of Medicine, Emory University School of Medicine, Atlanta, GA, USA 2 Division of Infectious Diseases, Department of Medicine, Emory University School of Medicine, Atlanta, GA, USA 3 Department of Psychiatry and Behavior Sciences, Emory University School of Medicine, Atlanta, GA, USA 4 Department of Social Work, Grady Health System, Atlanta, GA, USA 5 Hubert Department of Global Health, Rollins School of Public Health of Emory University, Atlanta, GA, USA 6 Department of Internal Medicine, Division of Infectious Diseases, Atlanta Veterans Affairs Medical Center, Atlanta, GA, USA
Corresponding Author: Sarah Lofgren, MD, 6401 France Ave S, Edina, MN 55435, USA. Email: [email protected]
Downloaded from ajh.sagepub.com at TULANE UNIV on January 26, 2015
American Journal of Hospice & Palliative Medicine®
2 Table 1. Individuals With HIV Who Were Eligible for Hospice.
Table 3. Services Assessed.
Malignancies (with the exception of cutaneous Kaposi sarcoma or 10% body weight in 6 months End-stage cardiac disease defined as New York Heart Association class IV heart failure, EF 1.5, serum albumin
