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

Rachel Krug, Daniel Karus, Peter A. Selwyn, Victoria Raveis

Research output: Contribution to journalArticle

Abstract

This study compares the self-assessments of 67 late-stage HIV/AIDS patients regarding their symptomatology, sense of self-worth, and several other aspects of their health-care situation, to assessments of that situation provided by their informal caregivers. As part of a dyadic study of care preferences, the patients and caregivers independently completed nearly identical versions of the Palliative Care Outcome Scale, a short 10-item measure of the patient's current health, social, and psychological status. The participants in the study were recruited from inpatient and outpatient services at an urban medical center. Substantial or moderate agreement, assessed by weighted kappa, was found between patient and caregiver assessments with regard to only four items assessing physical or emotional states of the patient (pain, other symptoms, anxiety, and life worthwhile). Fair or slight agreement was found for the six remaining items, including those assessing the patient's sense of self-worth, family/friends' anxiety, interactions with family/friends, and practical matters. Mean ratings of self-worth were significantly different for patients and caregivers. These findings underscore the clinical need to assess patient care outcomes directly, and they suggest the importance of facilitating more effective communication about relevant health issues among seriously ill patients, caregivers, and health-care providers.

Original languageEnglish (US)
Pages (from-to)23-32
Number of pages10
JournalJournal of Pain and Symptom Management
Volume39
Issue number1
DOIs
StatePublished - Jan 1 2010

Fingerprint

Palliative Care
Caregivers
Acquired Immunodeficiency Syndrome
HIV
Patient Care
Anxiety
Patient Preference
Health
Ambulatory Care
Health Personnel
Inpatients
Communication
Psychology
Delivery of Health Care
Pain

Keywords

  • HIV/AIDS
  • palliative care
  • patient-caregiver report agreement
  • underserved populations

ASJC Scopus subject areas

  • Nursing(all)
  • Clinical Neurology
  • Anesthesiology and Pain Medicine

Cite this

Late-Stage HIV/AIDS Patients' and Their Familial Caregivers' Agreement on the Palliative Care Outcome Scale. / Krug, Rachel; Karus, Daniel; Selwyn, Peter A.; Raveis, Victoria.

In: Journal of Pain and Symptom Management, Vol. 39, No. 1, 01.01.2010, p. 23-32.

Research output: Contribution to journalArticle

@article{75795588108544adac39bdeabb4f94b9,
title = "Late-Stage HIV/AIDS Patients' and Their Familial Caregivers' Agreement on the Palliative Care Outcome Scale",
abstract = "This study compares the self-assessments of 67 late-stage HIV/AIDS patients regarding their symptomatology, sense of self-worth, and several other aspects of their health-care situation, to assessments of that situation provided by their informal caregivers. As part of a dyadic study of care preferences, the patients and caregivers independently completed nearly identical versions of the Palliative Care Outcome Scale, a short 10-item measure of the patient's current health, social, and psychological status. The participants in the study were recruited from inpatient and outpatient services at an urban medical center. Substantial or moderate agreement, assessed by weighted kappa, was found between patient and caregiver assessments with regard to only four items assessing physical or emotional states of the patient (pain, other symptoms, anxiety, and life worthwhile). Fair or slight agreement was found for the six remaining items, including those assessing the patient's sense of self-worth, family/friends' anxiety, interactions with family/friends, and practical matters. Mean ratings of self-worth were significantly different for patients and caregivers. These findings underscore the clinical need to assess patient care outcomes directly, and they suggest the importance of facilitating more effective communication about relevant health issues among seriously ill patients, caregivers, and health-care providers.",
keywords = "HIV/AIDS, palliative care, patient-caregiver report agreement, underserved populations",
author = "Rachel Krug and Daniel Karus and Selwyn, {Peter A.} and Victoria Raveis",
year = "2010",
month = "1",
day = "1",
doi = "10.1016/j.jpainsymman.2009.05.010",
language = "English (US)",
volume = "39",
pages = "23--32",
journal = "Journal of Pain and Symptom Management",
issn = "0885-3924",
publisher = "Elsevier Inc.",
number = "1",

}

TY - JOUR

T1 - Late-Stage HIV/AIDS Patients' and Their Familial Caregivers' Agreement on the Palliative Care Outcome Scale

AU - Krug, Rachel

AU - Karus, Daniel

AU - Selwyn, Peter A.

AU - Raveis, Victoria

PY - 2010/1/1

Y1 - 2010/1/1

N2 - This study compares the self-assessments of 67 late-stage HIV/AIDS patients regarding their symptomatology, sense of self-worth, and several other aspects of their health-care situation, to assessments of that situation provided by their informal caregivers. As part of a dyadic study of care preferences, the patients and caregivers independently completed nearly identical versions of the Palliative Care Outcome Scale, a short 10-item measure of the patient's current health, social, and psychological status. The participants in the study were recruited from inpatient and outpatient services at an urban medical center. Substantial or moderate agreement, assessed by weighted kappa, was found between patient and caregiver assessments with regard to only four items assessing physical or emotional states of the patient (pain, other symptoms, anxiety, and life worthwhile). Fair or slight agreement was found for the six remaining items, including those assessing the patient's sense of self-worth, family/friends' anxiety, interactions with family/friends, and practical matters. Mean ratings of self-worth were significantly different for patients and caregivers. These findings underscore the clinical need to assess patient care outcomes directly, and they suggest the importance of facilitating more effective communication about relevant health issues among seriously ill patients, caregivers, and health-care providers.

AB - This study compares the self-assessments of 67 late-stage HIV/AIDS patients regarding their symptomatology, sense of self-worth, and several other aspects of their health-care situation, to assessments of that situation provided by their informal caregivers. As part of a dyadic study of care preferences, the patients and caregivers independently completed nearly identical versions of the Palliative Care Outcome Scale, a short 10-item measure of the patient's current health, social, and psychological status. The participants in the study were recruited from inpatient and outpatient services at an urban medical center. Substantial or moderate agreement, assessed by weighted kappa, was found between patient and caregiver assessments with regard to only four items assessing physical or emotional states of the patient (pain, other symptoms, anxiety, and life worthwhile). Fair or slight agreement was found for the six remaining items, including those assessing the patient's sense of self-worth, family/friends' anxiety, interactions with family/friends, and practical matters. Mean ratings of self-worth were significantly different for patients and caregivers. These findings underscore the clinical need to assess patient care outcomes directly, and they suggest the importance of facilitating more effective communication about relevant health issues among seriously ill patients, caregivers, and health-care providers.

KW - HIV/AIDS

KW - palliative care

KW - patient-caregiver report agreement

KW - underserved populations

UR - http://www.scopus.com/inward/record.url?scp=73049107901&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=73049107901&partnerID=8YFLogxK

U2 - 10.1016/j.jpainsymman.2009.05.010

DO - 10.1016/j.jpainsymman.2009.05.010

M3 - Article

C2 - 19782531

AN - SCOPUS:73049107901

VL - 39

SP - 23

EP - 32

JO - Journal of Pain and Symptom Management

JF - Journal of Pain and Symptom Management

SN - 0885-3924

IS - 1

ER -