Using a Palliative Approach Early in HIV Care -- The CASA Study

This project has results

Abstracts

Public Abstract

Download this abstract: English (pdf) | Español (pdf) | Audio Recording (mp3)

What was the research about?

Palliative approaches to health care focus on improving patients’ quality of life by preventing and reducing suffering. Many people believe that health workers use palliative approaches only when patients are at the end of life. But health workers can use palliative approaches any time when caring for patients with a serious illness.

In this study, the research team trained health workers to use a palliative approach, along with usual care, in early care for HIV. HIV is a virus that makes it hard for the body to fight infections. HIV is a serious illness, but patients with HIV can have long lives with the right treatment.

The palliative approach in this study included

  • Learning patients’ beliefs, values, and priorities
  • Adjusting health goals on a regular basis based on patient, family, and staff input
  • Managing symptoms that affect quality of life, such as pain, depression, and anxiety
  • Giving health workers tips for talking to patients about difficult topics

The research team compared using the palliative approach early in HIV care with usual HIV care alone in improving well-being and quality of life for patients with HIV. The patients identified as young, same‐gender loving men.

What were the results?

The study didn’t find differences between patients who received the palliative approach early in their HIV care and those who received usual HIV care in

  • Distress caused by HIV symptoms
  • Mental well-being
  • Quality of life
  • Closely following their HIV treatment plans

Patients who received the palliative approach reported fewer symptoms over time that bothered them a lot.

Who was in the study?

The study included 197 patients ages 18 to 35 who had HIV and identified as same‐gender loving men. Patients received care from one of two HIV clinics in Baltimore, Maryland. Of these patients, 78 percent were black, 6 percent were white, and 7 percent were other races; also, 9 percent were Hispanic. The average age was 29.

What did the research team do?

The research team trained staff at one clinic on how to add the palliative approach to usual HIV care. Staff at a nearby clinic continued to provide usual care only. Patients at both clinics completed surveys at the start of the study and again 6 and 12 months later.

Patients living with HIV, HIV health workers, family members of people who died from HIV, and young, same-gender loving men provided feedback during the study.

What were the limits of the study?

Clinic staff may not have been able to use the palliative approach long enough for the research team to see an effect on the patients. The study took place in only one city. Results may differ in other cities.

How can people use the results?

Researchers can use these results when thinking about other ways to use palliative care to see if it can help improve care for patients with HIV.

Professional Abstract

Objective

To compare the effectiveness of implementing a palliative approach early in ongoing HIV care versus usual HIV care alone in improving patient outcomes

Study Design

Design Elements Description
Design Quasi-experimental study
Population 197 patients with HIV, ages 18 to 35, who identify as same-gender loving men
Interventions/
Comparators
  • Palliative approach (Care and Support Access (CASA)) early in HIV care plus usual HIV care
  • Usual HIV care
Outcomes

Primary: symptom-caused distress, psychological well-being, quality of life

Secondary: HIV treatment adherence
Timeframe Up to 18-month follow-up for primary outcomes

This quasi-experimental study examined outcomes for patients who received care from health workers trained to integrate a palliative approach early in ongoing HIV care compared with patients who received usual HIV care only. In this study, a palliative approach included

  • Multidimensional assessment of patient beliefs, values, and priorities
  • Regular adjustment of health goals based on patient, family, and staff input
  • Management of symptoms that affect quality of life, such as pain, depression, and anxiety
  • Skill training for health workers on communication about topics that are difficult to discuss

The study included 197 patients with HIV, ages 18 to 35, who identify as same-gender loving men. The research team recruited patients from two outpatient HIV clinics in Baltimore, Maryland. Of the patients, 78% were black, 6% were white, and 7% were other races; also, 9% were Hispanic. The average age was 29.

Staff at one clinic received training and coaching on integrating the palliative approach into outpatient care for patients in the early stages of HIV. The other clinic continued to provide usual HIV outpatient care. Patients at both clinics completed surveys on symptom-caused distress, psychological well-being, quality of life, and treatment adherence at baseline and at two 6-month follow-ups over a period of up to 18 months.

A community advisory panel of patients living with HIV, HIV clinicians, family members of people who died from HIV, and young same-gender loving men provided feedback during the study.

Results

Patients at the two clinics did not differ in any of the primary or secondary study outcomes. Subscale findings indicated that patients in the intervention clinic reported fewer symptoms that bothered them significantly (p<0.05).

Limitations

Clinic staff may not have been able to use the palliative approach long enough for the research team to see an effect on the patients. The study took place in a single city. Results may differ in other locations.

Conclusions and Relevance

For patients who identify as same-gender loving men, the study did not find differences in patient outcomes between the outpatient clinic where staff used a palliative approach early in ongoing HIV care versus the clinic providing usual HIV care.

Future Research Needs

Future research could continue to examine ways to improve ongoing HIV care.

Journal Articles

Related Articles

Journal of Palliative Care & Medicine

Patient Centered Care for Persons with HIV Disease: Protocol Review for CASA Study (Care and Support Access) Early in Chronic Disease Management

Journal of Pain and Symptom Management

Implementation of HIV Palliative Care: Interprofessional Education to Improve Patient Outcomes in Resource-Constrained Settings, 2004-2012

More on this Project  

This project's final research report is expected to be available by November 2019.

Peer Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments. 

Peer reviewers commented, and the researchers made changes or provided responses. The comments and responses included the following:

  • Reviewers were unclear on the primary and secondary endpoints of the study, given descriptions of patient-level well-being outcomes, staff-level work-related outcomes, and patient-level HIV-related outcomes. The researchers addressed the concerns by more clearly delineating that the primary outcomes of the study were related to patient-symptom distress and well-being. Staff outcomes and patient outcomes related to HIV-symptom status were secondary.
  • Reviewers noted that the conclusions overemphasized findings that were not significant but that suggested an intervention effect, rather than focusing on the pre-determined outcomes and statistical tests. The researchers revised the abstract and discussion to stress the lack of significant differences between the two interventions on the primary and secondary outcomes, and to consider factors that may have contributed to the lack of effect.

Conflict of Interest Disclosures

View the COI disclosure form.

Project Details

Principal Investigator
Carla S. Alexander, MD
Project Status
Completed; PCORI Public and Professional Abstracts Posted
Project Title
CASA: Care and Support Access Study for Implementation of a Palliative Approach with HIV Treatment
Board Approval Date
September 2013
Project End Date
February 2019
Organization
University of Maryland Baltimore
Year Awarded
2013
State
Maryland
Year Completed
2018
Project Type
Research Project
Health Conditions 
Infectious Diseases
HIV/AIDS
Intervention Strategies : 
Other Health Services Interventions
Training and Education Interventions
Populations : 
Racial/Ethnic Minorities
Low Income
LGBTQ
Individuals with Multiple Chronic/co-morbid Conditions
Funding Announcement
Improving Healthcare Systems
Project Budget
$2,180,143
Study Registration Information
HSRP20143563
NCT02136680
Page Last Updated: 
July 22, 2019