Service Needs of Patients with Advanced HIV Disease: A Comparison of Client and Staff Reports at Three Palliative Care Projects

Abstract

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.

HIV Case Management Support Service Is Associated with Improved CD4 Counts of Patients Receiving Care at the Antiretroviral Clinic of Pantang Hospital, Ghana

“…Early diagnosis and initiation of ART based on current treatment guidelines could reduce HIV- related morbidity and mortality [ 16 ]. The majority of the participants had first CD4 count test results below 350 cells/mm 3 before their enrollment on ART.…”

“…In Ghana, healthcare facilities that provide HIV/AIDS services do not facilitate provision of comprehensive support services such as HIV/AIDS case management, peer group support, medication adherence, and nutritional enhancement among others due to inadequate resources. Meanwhile other studies have demonstrated that the provision of support services such as health insurance and transportation services is associated with retention of care of HIV patients [ 16 ].…”

Late-Stage HIV/AIDS Patients' and Their Familial Caregivers' Agreement on the Palliative Care Outcome Scale

“…HIV/AIDS patients with advanced disease continue to live with not only a risk of dying from the disease itself, but increasingly also from significant co-morbidities such as hepatitis and a variety of malignancies. Like their counterparts living with cancer, patients with advanced HIV/AIDS and their informal caregivers must continually cope with health care issues such as symptom management and threats posed by their illness to their psychological well being (28,29). Despite such similarities with regard to the caregiving situation, important sociodemographic differences between the HIV/AIDS and cancer patient populations associated with risk of infection with HIV, e.g., race/ethnicity, sexual orientation, history of intravenous drug use, age, suggest a need to further investigate patient-caregiver agreement within the context of HIV.…”

Health information exchange interventions can enhance quality and continuity of HIV care

“…HIE interventions can play a crucial role in facilitating the sharing of information among providers across the continuum of HIV care, which in turn can help close each of these gaps [28][29][30][31][32]. For instance, in settings where patients do not engage or remain in HIV care, it is possible to use coordinated information technology systems to identify out-of-care patients when they utilize any type of care (e.g.…”

“…medical case management) for those who have co-occurring conditions that impact the effectiveness of HIV care [26,27]. Previous research in RWP-funded health clinics suggests receipt of care and support services in RWP-funded health clinics are associated with better engagement in care, retention in care and patient health outcomes [28][29][30][31][32]. However, these same findings also indicate that the improved engagement, retention and health outcomes are not yet at levels that would be considered ideal [30].…”