Results Summary

What was the research about?

Understanding which aspects of health and wellness are most important to patients living with HIV can help clinics improve care. Clinics often have patients complete surveys about their health and wellness. This study created new sets of survey questions for people living with HIV.

This study had two parts. In the first part, the research team asked patients living with HIV and their clinicians, such as doctors and nurses, what health and wellness topics they found important. In the second part, the team created sets of survey questions for two topics: domestic violence and social support. The team then asked patients living with HIV to answer the questions.

What were the results?

The research team found that patients living with HIV and their clinicians ranked different topics as most important. Patients highly ranked HIV stigma and social support. In contrast, clinicians highly ranked drug, alcohol, and tobacco use. Patients and clinicians agreed on the importance of some topics. These topics were depression, taking medicine as directed, HIV symptoms, and sex behaviors that increase risk for HIV transmission.

Of 1,000 patients who responded to the domestic violence questions

  • 9 percent said they felt controlled by a partner in the past year
  • 5 percent said they were afraid of harm from a partner
  • 4 percent said a partner physically harmed them
  • 3 percent said a partner forced or pressured them to have sex

Of patients who responded to the social support questions, patients with less social support reported higher levels of depression and lower quality of life than patients with more social support did.

Who was in the study?

The first part of the study included 206 patients living with HIV and 17 clinicians. The patients and clinicians were from five HIV clinics across the country. In the second part of the study, more than 1,000 patients filled out the domestic violence questions, and 680 patients filled out the social support questions. These patients were from six HIV clinics across the country.

What did the research team do?

The research team convened a patient advisory board to help guide the study. The board included three patients receiving care from clinics at the University of Washington.

In the first part of the study, the research team asked patients and clinicians to rank health topics in order of importance. The team then held 11 group discussions with other patients. These patients also ranked the topics.

In the second part of the study, the team created survey questions for two topics. The patient advisory board had suggested domestic violence because it is common and harmful. Patients in the group discussions had rated social support as highly important.

The research team looked through existing health surveys to find questions about domestic violence. The team then asked patients to read the questions to see if they understood them as intended. Next, the team changed or removed questions that weren’t clear.

To develop questions about social support, the team used a similar process. The team found so many questions from existing health surveys that they needed to shorten the list. The team used questions that research studies had linked to patient health and a group of patients had rated as most important.

The team then asked patients living with HIV from across the United States to fill out surveys during routine healthcare visits. The surveys included the domestic violence and social support questions and other questions about the patients’ health.

What were the limits of the study?

The study included patients and clinicians from HIV specialty clinics only. Results may differ for patients and clinicians from other settings, such as primary care practices.

Future research could use the survey questions from this study to see how domestic violence and social support affect patient health.

How can people use the results?

Clinicians and patients can use the survey questions about domestic violence and social support to help understand the needs of patients living 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 review identified the following strengths and limitations in the report:

  • The reviewers found the report to be interesting and important. They were especially complimentary about the study’s focus on patient-reported alcohol use and abuse among people with HIV.
  • The reviewers asked for an expansion of the researchers’ rationale for having an additional focus on patient-reported intimate partner violence (IPV) and social support for people with HIV. The researchers added this justification, noting in their response that patients who rated their major concerns did not think IPV was a significant issue, despite evidence that IPV has negative health effects for people in this population. The researchers added that the topic of social support came up often in qualitative interviews with patients.

Conflict of Interest Disclosures

Project Information

Heidi M. Crane, MD, MPH
University of Washington
Expanding PRO Assessment Integrated into Routine Clinical Care of Patients with HIV to New PROMIS Domains: Identifying Patient Priorities, Developing Cross-Walks with Legacy Instruments, and Evaluating Predictive Validity

Key Dates

September 2014
July 2018

Study Registration Information


Has Results
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Last updated: April 29, 2024