Katherine Marconi

Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence

Background: The need for palliative care in HIV management is underlined by the high prevalence of pain and symptoms, the toxicity, side effects, and virological failure associated with antiretroviral therapy, emergence of co-morbidities, continued high incidence of malignancies, late presentation of people with HIV disease, and the comparatively higher death rates among the infected individuals. Methods: A systematic review was undertaken to appraise the effect of models of palliative care on patient outcomes. A detailed search strategy was devised and biomedical databases searched using specific terms relevant to models of palliative care. Data from papers that met the inclusion criteria were extracted into common tables, and evidence independently graded using well described hierarchy of evidence. Results: 34 services met the inclusion criteria. Of these, 22 had been evaluated, and the evidence was graded as follows: grade 1 (n = 1); grade 2 (n = 2); grade 3 (n = 7); grade 4 (n = 1); qualitative (n = 6). Services were grouped as: home based care (n = 15); home palliative care/hospice at home (n = 7); hospice inpatient (n = 4); hospital inpatient palliative care (n = 4); specialist AIDS inpatient unit (n = 2); and hospital inpatient and outpatient care (n = 2). The evidence largely demonstrated that home palliative care and inpatient hospice care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, insight, and spiritual wellbeing. Conclusions: Although the appraisal of evidence found improvements across domains, the current body of evidence suffers from a lack of (quasi) experimental methods and standardised measures. The specialism of palliative care is responding to the clinical evidence that integration into earlier disease stages is necessary. Further studies are needed to both identify feasible methods and evaluate the apparent beneficial effect of palliative care on patient outcomes in the post-HAART era.

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

BackgroundIn 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.MethodsA 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.ResultsDespite great structural challenges, data from 48 programs in 14 countries with a mean annual funding of US

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

374,884 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.ConclusionsThe 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.

Factors influencing waiting time and successful receipt of cadaveric liver transplant in the United States. 1990 to 1992.

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.

Factors associated with delays in accessing HIV primary care in rural Arkansas.

OBJECTIVES Despite concern about access to liver transplantation, there has been no nationally based analysis of patients waiting for cadaveric liver transplant. Using data from the United Network for Organ Sharing Organ Procurement and Transplantation Network database waiting and recipient lists, we examined the influence of medical and non-medical factors on the length of time patients waited before transplant and whether they survived the wait. METHODS The authors analyzed 7,422 entries to the waiting list from October 1, 1990 to December 31, 1992. Using Cox Proportional Hazard models, time to transplant was modelled by gender, nationality and ethnicity, age, blood type, medical status (critically ill versus non-critical), transplant number (first versus retransplant), United Network for Organ Sharing region of the country, and three measures of local demand and supply of organs. The risk of dying before being allocated an organ was compared with receiving an organ using multiple logistic regression models. RESULTS In addition to differences by medical status, blood type, geographic region, and organ supply and demand, it was found that women, Hispanic-Americans, Asian-Americans, and children waited longer for transplant, whereas foreign nationals and repeat transplant patients waited fewer days. The risk of dying before transplant was greater for critically ill and repeat transplant patients, as well as for women, older patients, Asian-Americans, and African-Americans. Children were less likely to die, as were patients from certain blood groups and geographic regions. CONCLUSIONS Results confirm known patterns of waiting list experience for liver transplant patients, but also identify factors previously unrecognized as influencing waiting time and outcome. Potential explanatory factors and areas for further inquiry are discussed.

Legislative interventions to increase access to screening mammography

While debate continues at what stage of human immunodeficiency virus (HIV) disease to begin combination antiretroviral therapy, a number of clinical and public health benefits are linked to early entry into primary care soon after first testing HIV positive. However, HIV-infected patients continue to test late and delay entry into care. We used routinely collected demographic and clinical information to examine which factors are associated with delays in seeking care in a predominantly rural, economically poor area of Arkansas. The study population is 75% African American and male and 70% lack health insurance; nearly one fourth were referred from prison. At diagnosis, two thirds of the population had CD4 counts below 500 cells per microliter. Days from initial HIV diagnosis to entry into care declined from a median of 178 in 1994 to 24 in 1998. In 1998, 75% of the population entered into primary care within 2 months of diagnosis. However, CD4 counts at HIV diagnosis also declined in this period, from a median of 427 in 1995 to 208 cells per microliter in 1998. More recent year of diagnosis was associated with a shorter delay in seeking care; males, and individuals lacking health insurance took significantly longer to enter into care than females and those with insurance, respectively. Our univariate finding of extensive delays in seeking care in the prison population did not hold in the multivariate analysis. We found significant delays in time to initial HIV diagnosis, and further considerable delays in males and those lacking health insurance in the time taken to enter into primary care.

Developing a performance management system for a Federal public health program: the Ryan White CARE ACT Titles I and II

Although numerous studies have established that breast cancer mortality can be significantly reduced through early detection, only a small percentage of women obtain screening mammograms at intervals recommended by the National Cancer Institute, the American Cancer Society, and other major medical organizations. This paper examines the importance of cost as a barrier to routine screening and the state legislative movement to make screening mammography a basic health insurance benefit. Mammography “knowledge, attitudes, and behavior” studies offer conflicting findings on the extent to which cost enters into the decision to have a mammogram. Women seldom report cost as a major reason for postponing or failing to have a mammogram; yet, descriptive studies show a consistently positive relationship between income and mammography use.State mammography reimbursement laws vary greatly with respect to whether screening mammography is a required or optional benefit, payment limits, and eligibility and referral requirements. Although state-specific data on the percentage of women with private health insurance are not available, 1987 National Medical Expenditure Survey estimates for U.S. Census geographic divisions suggest that the New England, East North Central, West North Central, Middle Atlantic, and Mountain states have the highest percentages of women who are privately-insured and, thus, potentially eligible for legislated mammography benefits. Access to screening mammography also is likely to be influenced by the proportion of employer-sponsored health plans that are self-insured and, therefore, exempt from minimum benefit mandates and the extent to which women are aware of the screening coverage.

Perceived barriers to receiving HIV services in groups of traditionally underserved individuals: empirical models.

Both public and private sector organizations are increasingly being called upon to measure performance. In the public sector, this trend is evidenced by such legislative initiatives as the Government Performance and Results Act (GPRA). Yet performance measurement presents complex analytic and behavioral challenges and few models exist to guide policy makers and program managers in their attempts to respond to legislative mandates and market pressures for accountability through performance measurement. This article describes one approach to introducing performance measurement into a large Federal health program, the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, in response to GPRA. It places performance measurement within the broader concept of performance management. This approach is particularly applicable to large grant programs characterized by significant autonomy and variation at the local level. The article also discusses some of the characteristics of the HIV/AIDS epidemic which present unique challenges to performance measurement. q 2001 Elsevier Science Ltd. All rights reserved.

Access to palliative care in the USA: why emphasize vulnerable populations?

SUMMARY Persons living with HIV/AIDS face many issues that make them highly vulnerable to a number of health and social problems. As the demographics of the epidemic have shifted in recent years, many members of traditionally underserved groups have encountered barriers to entering the services system. This article uses data from seven national demonstration projects funded to enroll persons with HIV/AIDS who tend to “fall through the cracks” and help them access needed services. Data on the initial perceptions of the participants about barriers to accessing services were related to 17 indicators of traditionally underserved status including demographic characteristics and behavioral variables using the data modeling method of Exhaustive CHAID (Chi-squared Automatic Interaction Detector). Through the modeling methods, the groups most likely to experience a large number of barriers to service participation are identified. Having children needing care is particularly predictive of the level of barriers to care.

Practicing Palliative Care in Resource-Poor Settings

How we recognize and address the palliative care needs of marginalized, vulnerable, or socially excluded populations may very well be the measure of our success in integrating palliative care into current health systems. LuAnn Aday, who has written about access for under-served populations in the USA, defines vulnerable populations as being ‘at risk of poor physical, psychological, and/or social health’1. If we deconstruct her definition, being ‘at risk’ signifies a high probability of illness and inappropriate or no healthcare, and the possible causes include lack of access to preventive services, disease screening and treatment as well as lack of access to the housing, employment and other supportive structures that many of us take for granted. Aday then identifies some of the at-risk populations in the USA—the chronically ill and disabled, persons with AIDS, the mentally ill, alcohol and substance abusers, homeless people, immigrants and refugees and combinations of these1. We would add another category that crosses this list—membership of a minority or ethnic community. Because of our history of discrimination and unequal investment in health, social, and economic resources in these communities, they are disproportionately at risk. We already have some indication of differences among vulnerable populations in their knowledge of end-of-life care. For example, Silveira and DiPiero2 identified non-white race and low educational level as factors associated with lack of such knowledge and Shapiro et al.3, in the HIV Cost and Services Utilization Study (HCSUS), found differences in use of medical care and pharmaceuticals by race, gender, and insurance status. Another study followed Medicare patients admitted to hospital in three American States (Illinois, New York, and Pennsylvania) with principal diagnoses of congestive heart failure and pneumonia4; on a series of measures, black patients were found to receive lower-quality care than non-black patients, and these differences persisted when groups with equivalent poverty levels were compared. In the USA, lack of insurance may complicate access. But data from other countries indicate that universal health coverage does not always result in universal access. For example, a Canadian study found that access to cardiac services decreased, and mortality rates after acute myocardial infarction increased, by income grouping: the lower the income quintile, the more adverse the health consequences5. We know which populations are at high risks of illness and we have studied the barriers to their obtaining good-quality healthcare. In our palliative care planning we need to discuss how to lessen the chances of excluding them as we integrate palliative care with primary and specialty healthcare and end-of-life care such as hospice.