Expanding Patient-Reported Outcome (PRO) Assessment Integrated into Routine Clinical Care of Patients with HIV to New Patient-Reported Outcomes Measurement Information System (PROMIS) Domains: Identifying Patient Priorities, Developing Cross-Walks with Legacy Instruments, and Evaluating Predictive Validity [Methods Study], United States, 2015-2019 (ICPSR 39566)

Version Date: Nov 24, 2025

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Principal Investigator(s):
Heidi M. Crane, University of Washington

https://doi.org/10.3886/ICPSR39566.v1

Version V1

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Summary

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.

Citation

Crane, Heidi M. Expanding Patient-Reported Outcome (PRO) Assessment Integrated into Routine Clinical Care of Patients with HIV to New Patient-Reported Outcomes Measurement Information System (PROMIS)  Domains: Identifying Patient Priorities, Developing Cross-Walks with Legacy Instruments, and Evaluating Predictive Validity [Methods Study], United States, 2015-2019. Inter-university Consortium for Political and Social Research [distributor], 2025-11-24. https://doi.org/10.3886/ICPSR39566.v1

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Funding

Patient-Centered Outcomes Research Institute (PCORI) (ME-1403-14081)

Subject Terms

Geographic Coverage

Distributor(s)

Inter-university Consortium for Political and Social Research
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Time Period(s)

2015 -- 2019
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Study Purpose

To identify patient-reported outcome (PRO) domains that are important for people living with HIV and their clinicians and to develop measures to fill gaps in these important domains

Study Design

The Patient-Reported Outcomes Measurement Information System (PROMIS) is a series of PRO measures that assess different domains of health, including well-being, function, and symptoms. The research team examined which PROMIS domains were most important to people living with HIV and their clinicians and developed measures for two new domains not in PROMIS. A patient advisory board of three people living with HIV and receiving care from the University of Washington provided input to the research team.

In the first part of the study, the research team asked 206 people living with HIV and 17 clinicians to rank 25 PRO domains in order of importance. The team also held 11 focus groups with people living with HIV to perform the same ranking exercise and discuss their responses.

In the second part of the study, the research team selected and developed measures for two domains, intimate partner violence and social support. The patient advisory panel suggested developing a measure for intimate partner violence due to its high prevalence and impact. Social support emerged as a priority in focus group discussions.

For intimate partner violence, the research team reviewed the literature to compile a list of validated PRO items, removing items that were redundant. Next, 44 people living with HIV reviewed the items. The team modified or dropped items that readers did not understand as intended. The final measure included four items.

For social support, the team conducted a similar literature and item review process. Because of the large number of items in the literature, the team reduced the item set based on interviews with 32 people living with HIV and then included only items that were closely linked to health outcomes. Finally, 24 people living with HIV ranked the items in order of importance. The final measure had eight items.

At six clinics across the country, the team administered the two measures, along with other PRO measures, to people living with HIV. More than 1,000 people completed the intimate partner violence items, and 680 completed the social support items.

Universe

Patients living with HIV across United States

Data Source

Focus groups with people living with HIV and their clinicians, surveys from people living with HIV and their clinicians, literature review, interviews with people living with HIV, field test of newly developed measures"

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Original Release Date

2025-11-24

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Notes

  • The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.

  • ICPSR usually offers files in multiple formats for researchers to be able to access data and documentation in formats that work well within their needs. If you have questions about the accessibility of materials distributed by ICPSR or require further assistance, please visit ICPSR’s Accessibility Center.

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This study is maintained and distributed by the Patient-Centered Outcomes Data Repository (PCODR). PCODR is the official data repository of the Patient-Centered Outcomes Research Initiative (PCORI).