Results Summary

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.

Final Research Report

View this project's final research report.

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

Project Information

Carla S. Alexander, MD
University of Maryland Baltimore
$2,173,269
10.25302/05.2020.IH.13047297
CASA: Care and Support Access Study for Implementation of a Palliative Approach with HIV Treatment

Key Dates

September 2013
February 2019
2013
2018

Study Registration Information

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Last updated: January 25, 2023