PROMS and PREMS: Outcome and Experience Measures

The involvement of people with HIV in their care has been a hallmark of the Ryan White HIV/AIDS Program (RWHAP) since its inception. Patient-reported outcome measures (PROMS) and patient reported experience measures (PREMS), can be used to improve health outcomes and experiences on an individual, organizational, and systemic level, are an emerging topic in the field of performance measurement and QI.

  • Patient-Reported Outcome Measures (PROMS). PROMS are defined as any measurement of patient’s well-being or perceptions of their health status, which can only be determined by directly asking the patient. These are measured using standardized, often validated questions or instruments. Examples include depression, anxiety, pain, fatigue, etc. Examples of prioritized PROMS as defined by our experts during the pilot project are: Quality of Life/Well-being, Housing Stability, Mental Health, Perceived Discrimination, and Food Security.
  • Patient-Reported Experience Measures (PREMS).PREMS are defined as measures of the patient's personal experience of the healthcare they have received. These include respect, communication, privacy, engagement in shared decision-making, as well as the environment in which care is delivered. Examples of prioritized PREMS as defined by our experts during the pilot project are: Racism, Respect/Dignity, Privacy/Confidentiality, Communication, Shared Decision-Making.

The Center for Quality Improvement and Innovation (CQII) — in partnership with the Institute for Healthcare Improvement (IHI) and HRSA HIV/AIDS Bureau (HAB) — has taken steps to support more patient-centered HIV care through the incorporation of PROMS and PREMS into RWHAP providers’ QI activities. CQII’s initial activities to explore this emerging QI topic are described below.

PROMS+PREMS Pilot Project Report

PROMS and PREMS In Practice

To initially explore the understanding of, attitudes towards, and experience with PROMS and PREMS across RWHAP-funded providers of ambulatory care services, CQII conducted a series of focus groups with participants in the CQII’s create+equity Collaborative.

Participants represented RWHAP provider staff including data manager/QI lead, senior manager, social worker, HCV coordinator, program coordinator, and quality manager. In total, 3 calls were conducted between June and July 2021 using a standardized interview guide.

CQII Focus Groups on PROMS and PREMS: Key Findings

  • Participants saw the potential benefits of using PROMS and PREMS for QI and in gaining additional insights from direct input by HIV patients.
  • Though focus group participants’ sites routinely screen patients for health outcomes (e.g., mental health, substance use) and ask clients for feedback regarding their health care experience (e.g., satisfaction surveys, feedback forms), the PROMS and PREMS measurement frameworks are new to them.
  • For focus group participants, the concepts were intuitive, based on their previous and current works, and could be incorporated into current improvement activities.
  • Participants showed a strong interest in learning new skills and techniques to improve quality of care beyond approaches centering on viral suppression rates and patient satisfaction surveys.
  • Clear examples of PROMS and PREMS, specifically for HIV care, should be provided to show how they are implemented in the real world and the benefit of doing so.
Read the Focus Group Summary Report

CQII compiled articles on various topics related to: PROMS; PREMS; PROMS and PREMS in HIV care; priorities, problems, and concerns for HIV patients highlighted in PROMS domains of need; and PROMS and PREMS frameworks.

Findings from the literature imply that, while PROMS and PREMS may be novel terms, the underlying concepts are not. There is history of successful implementation of various screenings, such as mental health, substance use, housing, among others, that have gathered patient-derived data to use for quality improvement and HIV care. Both PROMS/PREMS and QI share a special focus on the patient experience and the use of data. When the appropriate PROMS or PREMS tool is identified, piloted, and refined, the data collected can help support ongoing QI efforts and result in better health outcomes.

Read the Literature Overview Summary Report

As emerging topics in the quality improvement (QI) field, Patient-Reported Outcome Measures (PROMS) and Patient-Reported Experience Measures (PREMS) have potential value as QI data sources to improve care for clients served by Ryan White HIV/AIDS Program-funded providers. To explore the understanding of, attitudes towards, and experience with PROMS and PREMS, CQII partnered with the Institute for Healthcare Improvement (IHI) to host a two-day expert meeting in October 2021. Participants consisted of academic content experts, RWHAP providers, people with HIV, QI managers, and public health specialists.

For both PROMS and PREMS, participants explored developing a shared understanding of the measurement framework; implementation strategies for measurement; barriers to improving patient experiences and outcomes; implementation strategies; and initial ranking of the most important domains for PROMS and PREMS. The meeting contained several presentations and five (5) breakout sessions.

Participants worked in their respective PROMS or PREMS breakout groups to review and discuss various domains that were presented to them and had the opportunity to add additional domains Given a working list of possible domains and examples of domain measures, participants were asked to evaluate each domain while considering these criteria: Is it important to measure? (to whom and for what?); Can you measure it?; Would you actually use the information?; How heavy of a collection/reporting burden do you think this would be for a busy Ryan White-funded clinic?; and Can a measure in this domain be easily linked to quality improvement efforts?

Read the Expert Meeting Summary Report

In partnership with the HRSA HIV/AIDS Bureau, the Center for Quality Improvement and Innovation (CQII) conducted a national survey about the experiences of Ryan White HIV/AIDS Program-funded providers to examine their familiarity with and experiences in using Patient-Reported Outcome Measures (PROMS) and Patient-Reported Experience Measures (PREMS). The PROMS and PREMS National Survey, announced in December 2021, included questions about the current use of PROMS and PREMS in HIV care, as well as perspectives on implementation barriers and feasibility of measurement. The main goals of the survey were to validate if various domains of PROMS and PREMS were relevant to HIV care, if those domains were perceived to be feasible to measure and implement in busy Ryan White ambulatory care settings and used to inform quality improvement. The PROM domains were Patient Well-Being, Housing Stability, Mental Health, Discrimination, Food Security, Self-Efficacy for Managing Chronic Conditions, and Adolescents and Young Adults. The PREM domains were Racism, Respect/Dignity, Privacy/Confidentially, Communication, Shared Decision-Making, Perceived Importance of Services, Accessibility, and Continuity/Coordination of Care. In addition, questions were asked to gather perspectives on the PROMS and PREMS domains, previously prioritized by an interdisciplinary group, as well as to gauge interest in a PROMS and PREMS Pilot Project about implementing these measures for quality improvement.

The results suggest a lack of experience in measuring and using PROMS and PREMS in RWHAP-funded settings, which supported the need for a pilot study to measure the feasibility of implementing PROMS or PREMS in real time and to use results to improve quality of care and health outcomes.

Read the National Survey Report

The findings and lessons learned from the PROMS and PREMS Pilot Project resulted in the development of a guidance document: Patient-Reported Outcomes and Experiences – Elevating Patients’ Voices to Improve the Quality of HIV Treatment and Care. The Guide may be used as an introduction to measuring patient-reported outcomes and experiences and for helping to develop strategies for planning and implementing the collection of these data and then acting on them. If you are new to these types of measurements, you may want to read the Guide in its entirety as it provides a step-by-step approach and suggests domains for both PROMS and PREMS. For the more experienced, this Guide provides real world examples and useful resources that can be used to refine existing activities.

The goal of the Guide is to increase awareness among RWHAP providers about the purpose of PROMS and PREMS as additional QI measures, beyond viral suppression, and show how to use them to improve patients' health outcomes and treatment experiences.

In addition, the Guide provides a framework for integrating PROMS and PREMS into existing clinical quality management program activities conducted by RWHAP providers and offers an array of tools/resources that can be used to collect patient-reported outcome and patient-reported experience data and utilize the findings to improve HIV care and experiences.

The Guide is designed for all RWHAP stakeholders focused on improving the quality of HIV care and treatment, the health outcomes of RWHAP patients, and the quality of life of patients served by the RWHAP. In particular, it focuses on those who will be involved in the planning and implementation of activities to measure patient-reported outcomes and experiences and developing strategies to respond to the data collected. These include: quality management staff, clinicians and other frontline staff, administrators, and most importantly, people with HIV.

Coming Soon - Implementation Guide.

PROMS+PREMS Pilot Project

CQII worked in close collaboration with the Institute for Healthcare Improvement (IHI) and its federal funder, the HRSA HIV/AIDS Bureau, to support an initial 10 sites participating in the PROMS+PREMS Pilot Project.

Read the PROMS+PREMS Pilot Project