Patient reports of symptoms and their treatment at three palliative care projects servicing individuals with HIV/AIDS.

Self-reports of 32 symptoms and their treatments were obtained from patients of three palliative care programs that provide services to seriously ill HIV patients (>or=95% AIDS) in Alabama (n=47), Baltimore (n=91), and New York City (n=117). On average, patients reported 10.9 (SD=7.6) to 12.7 (SD=6.2) symptoms. Pain, lack of energy, and worrying were reported by a majority of patients at all sites, often with a high level of associated distress. For only four symptoms (pain, nausea, difficulty swallowing, and mouth sores) did half or more of patients at all sites experiencing the symptom also report treatment. Less than a third of patients experiencing 12 symptoms (five of six comprising a psychological subscale) reported treatment. Results show that despite the availability of more efficacious treatments, many HIV/AIDS patients continue to experience significant physical and psychological symptomatology. Many of those experiencing symptoms, however, do not perceive their symptoms as being treated.

Access and equity in HIV/AIDS palliative care: a review of the evidence and responses.

The high prevalence of pain and other symptoms throughout the HIV disease trajectory, the need for management of side effects related to antiretroviral therapy, the continuing incidence of cancers and new emerging co-morbidities as a result of extended life expectancy under new therapeutic regimes, and the ongoing need for terminal care all prove the curative versus palliative dichotomy to be inappropriate. Although there is evidence for both need and effectiveness of palliative care in HIV patient care, access is often poor and care less than optimal. This review aimed to identify evidence of barriers and inequalities in HIV palliative care in order to inform policy and service development. Biomedical databases were searched using a specific strategy, and evidence extracted into the barrier and inequity categories of patient, clinician, service and disease factors. A model of the barriers and inequalities is presented from the evidence. Recommendations are made from the evidence for promoting access and outcomes through integrated palliative care from diagnosis to end-of-life, alongside antiretroviral therapy when initiated. Service responses that have attempted to increase access to palliative care are presented.

Health and support service utilization patterns of American Indians and Alaska Natives diagnosed with HIV/AIDS.

The purpose of this analysis is twofold: to examine the types of health and support services provided by CARE Act funded providers to American Indians/Alaska Natives and to compare the characteristics and service utilization patterns for this group with those of individuals from other racial/ethnic groups. We present an analysis of the demographic characteristics, service utilization, and health outcomes of all HIV-infected clients who received services in five geographic areas at agencies that were funded through the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. Standard chi-square tests were used to test for statistically significant differences (p <.05) between the demographic characteristics and service utilization patterns of matched pairs of HIV-positive American Indian/Native Alaskans with HIV-positive individuals of other racial and ethnic backgrounds. Individuals were matched on gender, age, insurance, AIDS diagnosis, and site. Other data examined include client characteristics (income, homelessness, HIV exposure category, and source of health care), health indicators (CDC-defined disease stage, CD4+ counts, substance abuse and psychiatric illness) and service utilization (medical care; mental health treatment/counseling; substance abuse treatment/counseling; case management; dental care; housing, food, emergency financial, and transportation assistance, and buddy/companion and client advocacy services). There were no statistically significant differences between the two groups for HIV exposure category, CD4 count, substance abuse problem, and being homeless and in their likelihood to receive medical care, mental health or substance abuse treatment/counseling, dental care, food, emergency financial, and transportation assistance, as well as buddy/companion and client advocacy services. They were more likely (55% vs. 46%) to receive case management services than the matched individuals from other racial/ethnic groups. They were also more likely to receive housing assistance (35% vs. 25%). The analysis provides evidence that when individuals are matched on key demographic and health characteristics, few differences remain between HIV-positive American Indians/Native Alaskans and other racial/ethnic groups. The two exceptions are case management and housing assistance. The significantly higher use of case management is not surprising, given the emphasis by American Indians/Alaska Natives on traditional Native American case management case management. In contrast, the significantly higher use of housing assistance by American Indians/Alaska Natives was unexpected. Exploring the potential need for housing assistance among all American Indians/Alaska Natives served by the Ryan White CARE Act needs to be considered.

Service needs of patients with advanced HIV disease: a comparison of client and staff reports at three palliative care projects.

Despite prolonged survival and improved quality of life as a result of treatment advances for HIV/AIDS, thousands still suffer with the disease and 15-16,000 a year die in the United States alone. Little is known about those patients with HIV/AIDS who still require palliative care services or the types of services needed. This paper describes the program elements and clients of three programs providing palliative care to persons with HIV/AIDS in Alabama (n = 41), Baltimore, Maryland, (n = 55), and New York City (n = 52). Also presented are the prevalence of need for 27 services as assessed by clients and staff, the level of agreement found between client and staff assessments at each site, and services for which prevalence of need varied among programs. Interviews were conducted between June 2000 and October 2002. The majority of clients at all programs were socioeconomically disadvantaged, persons of color, and had a history of substance abuse, although significant differences were noted in the distributions of clients at each program with regard to these characteristics. Greater differences were observed among programs in the prevalence of need reported than were found between reports of clients and staff at the same program. Despite these differences, a common set of medical (ambulatory/outpatient care, laboratory testing, pharmacy) and ancillary (nutritional counseling, transportation) services was identified by at least 25% of clients and staff at each program. These findings suggest that need, beyond a core of medical and ancillary services, is relative and best conceptualized as a mixture of need, demand, and supply. The need for a mix of "care" and "cure" services identified reflect the erratic disease trajectory experienced by some clients who move in and out of treatment as well as the vulnerability and marginalized lives of the clients served by these programs.

Mental health status of clients from three HIV/AIDS palliative care projects.

OBJECTIVE: To describe mental health status and its correlates among clients of three palliative care programs targeting underserved populations. METHODS: Mental Health Inventory (MHI-5) scores of clients from programs in Alabama (n = 39), Baltimore (n = 57), and New York City (n = 84) were compared. RESULTS: Mean MHI-5 scores did not differ among sites and were indicative of poor mental health. Significant differences were noted among sites with regard to client sociodemographics, physical functioning, and perceptions of interpersonal relations. Results of multivariate regression models estimated for each site suggest variation in the relative importance of potential predictors among sites. Whereas poorer mental health was primarily associated with history of drug dependence at Baltimore and more physical symptomatology at New York, better mental health was most strongly correlated with more positive perceptions of interpersonal relationships at Baltimore and increasing age and more positive perceptions of meaning and purpose in life at New York. SIGNIFICANCE OF RESULTS: The data presented suggest the importance of assessing clients' history of and current need for mental health services. Evidence of a relationship between positive perceptions of meaning and purpose and better psychological function underscores the importance of existential issues for the overall well-being of those who are seriously ill.

Current HIV/AIDS end-of-life care in sub-Saharan Africa: a survey of models, services, challenges and priorities.

BACKGROUND: In response to increased global public health funding initiatives to HIV/AIDS care in Africa, this study aimed to describe practice models, strategies and challenges to delivering end-of-life care in sub-Saharan Africa. METHODS: A survey end-of-life care programs was conducted, addressing the domains of service aims and configuration, barriers to pain control, governmental endorsement and strategies, funding, monitoring and evaluation, and research. Both closed and qualitative responses were sought. RESULTS: Despite great structural challenges, data from 48 programs in 14 countries with a mean annual funding of US 374,884 dollars demonstrated integrated care delivery across diverse settings. Care was commonly integrated with all advanced disease care (67%) and disease stages (65% offering care from diagnosis). The majority (98%) provided home-based care for a mean of 301 patients. Ninety-four percent reported challenges in pain control (including availability, lack of trained providers, stigma and legal restrictions), and 77% addressed the effects of poverty on disease progression and management. Although 85% of programs reported Government endorsement, end-of-life and palliative care National strategies were largely absent. CONCLUSIONS: The interdependent tasks of expanding pain control, balancing quality and coverage of care, providing technical assistance in monitoring and evaluation, collaborating between donor agencies and governments, and educating policy makers and program directors of end-of-life care are all necessary if resources are to reach their goals.

Evaluation of pediatric HIV care provided in Ryan White CARE Act Title IV Women, Infants, Children, and Youth Clinics.

This evaluation examines the changing practices and outcomes of pediatric HIV care provided by the Ryan White Comprehensive AIDS Resources and Emergency (CARE) Act, Title IV grantees from 1996 through 1998--a period of rapidly changing medical practice within the United States. Using medical chart abstraction, 26 Title IV grantees reported information from the records of 525 HIV positive clients between the ages of 2 and 12. The chart abstractions covered medical care and case management provided to these clients including the number of clinical visits, use of antiretroviral therapy, use of laboratory tests such as CD4+ cell count (cells/mm3) and HIV-1 RNA viral load (copies/mL), enrollment in clinical trials, and receipt of opportunistic infection prophylaxis. Information on disease progression and hospitalization as well as client socio-demographic characteristics also is analyzed. Study results indicate that use of HIV combination therapy increased, while the occurrence of opportunistic infections and hospitalizations decreased. The increasing use of new pharmaceuticals during the study period indicates the feasibility of transferring information learned about HIV treatments from clinical trials to clinical practices that treat primarily Medicaid and pediatric populations.

Trends and responsiveness in national resource allocation for needed HIV services: a five year (1996-2000) analysis.

A recent study conducted by the Institute of Medicine concluded that there are approximately 1,200 to 1,400 avoidable deaths per year in the U.S. among people living with HIV (PLWH) who do not have health insurance (Institute of Medicine, 2002). The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was passed by the U.S. Congress in 1990 to provide funding for community-based HIV care services for uninsured and underinsured PLWH--the only Federal program to provide such funding. There is substantial local autonomy in the allocation of CARE Act funds, with planning processes that take place in both States and metropolitan areas. The purpose of this study is to examine trends in the allocation of such funds from 1996 through 2000, the first five years during which effective antiretroviral medications were available for HIV. The study also considers whether these trends were responsive to the evolving modalities of care and the service needs of a changing population of PLWH.

Delivering HIV services to vulnerable populations: a review of CARE Act-funded research.

This article summarizes key findings from evaluation and research studies that have received financial support from the HIV/AIDS Bureau of the Health Resources and Services Administration or from Ryan White Comprehensive AIDS Resources Emergency (CARE) Act grantees. These studies suggest that the CARE Act has improved but not equalized service accessibility, quality, and outcomes for different populations living with HIV disease. Evaluations of access to highly active antiretroviral therapy (HAART) found that uninsured patients, women, people of color, and injection drug users waited much longer than others to receive the new therapies. These disparities were not uniform across study sites, suggesting that clinic characteristics and geographic location have a major influence on prescribing patterns. Once patients gained access to HAART, health insurance status made little difference in clinical outcomes.

Delivering HIV services to vulnerable populations: an evaluation and research agenda.

In May 2000, the HIV/AIDS Bureau of the Health Resources and Services Administration convened HIV experts from throughout the country to identify new and emerging areas of research needed to guide policy and programmatic decisions on HIV service delivery to vulnerable populations. This article describes the process used to develop an evaluation/research agenda, discusses key findings and recommendations of the conference, and proposes a set of principles to guide the design and conduct of future investigations. Conference participants identified nine major evaluation/research themes that span the continuum of HIV behavioral prevention services and treatment. They recommended focusing future research on questions relevant to populations experiencing rapid rates of increase in HIV infection (for example, women, people of color, and adolescents and young adults) and considering explanatory factors at multiple levels of analysis (individual, clinician, organization, service delivery system, and environment).