Service Needs of Patients with Advanced HIV Disease

A Comparison of Client and Staff Reports at Three Palliative Care Projects

Daniel Karus, Victoria H. Raveis, Katherine Marconi, Barbara Hanna, Peter A. Selwyn, Carla Alexander, Margaret Perrone, Irene Higginson

Research output: Contribution to journalArticle

11 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)145-158
Number of pages14
JournalAIDS Patient Care and STDs
Volume18
Issue number3
DOIs
StatePublished - Mar 2004

Fingerprint

Palliative Care
Acquired Immunodeficiency Syndrome
HIV
Ambulatory Care
Baltimore
Vulnerable Populations
Substance-Related Disorders
Counseling
Color
Quality of Life
Interviews
Survival
Therapeutics

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Leadership and Management
  • Nursing(all)

Cite this

Service Needs of Patients with Advanced HIV Disease : A Comparison of Client and Staff Reports at Three Palliative Care Projects. / Karus, Daniel; Raveis, Victoria H.; Marconi, Katherine; Hanna, Barbara; Selwyn, Peter A.; Alexander, Carla; Perrone, Margaret; Higginson, Irene.

In: AIDS Patient Care and STDs, Vol. 18, No. 3, 03.2004, p. 145-158.

Research output: Contribution to journalArticle

Karus, Daniel ; Raveis, Victoria H. ; Marconi, Katherine ; Hanna, Barbara ; Selwyn, Peter A. ; Alexander, Carla ; Perrone, Margaret ; Higginson, Irene. / Service Needs of Patients with Advanced HIV Disease : A Comparison of Client and Staff Reports at Three Palliative Care Projects. In: AIDS Patient Care and STDs. 2004 ; Vol. 18, No. 3. pp. 145-158.
@article{927349f939634719a417bdfe6bae0187,
title = "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.",
author = "Daniel Karus and Raveis, {Victoria H.} and Katherine Marconi and Barbara Hanna and Selwyn, {Peter A.} and Carla Alexander and Margaret Perrone and Irene Higginson",
year = "2004",
month = "3",
doi = "10.1089/108729104322994838",
language = "English (US)",
volume = "18",
pages = "145--158",
journal = "AIDS Patient Care and STDs",
issn = "1087-2914",
publisher = "Mary Ann Liebert Inc.",
number = "3",

}

TY - JOUR

T1 - Service Needs of Patients with Advanced HIV Disease

T2 - A Comparison of Client and Staff Reports at Three Palliative Care Projects

AU - Karus, Daniel

AU - Raveis, Victoria H.

AU - Marconi, Katherine

AU - Hanna, Barbara

AU - Selwyn, Peter A.

AU - Alexander, Carla

AU - Perrone, Margaret

AU - Higginson, Irene

PY - 2004/3

Y1 - 2004/3

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=1842531210&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=1842531210&partnerID=8YFLogxK

U2 - 10.1089/108729104322994838

DO - 10.1089/108729104322994838

M3 - Article

VL - 18

SP - 145

EP - 158

JO - AIDS Patient Care and STDs

JF - AIDS Patient Care and STDs

SN - 1087-2914

IS - 3

ER -