Overview

What is a patient-reported outcome measure (PROM)?

Patient-reported outcome measures (PROMs) are questionnaires that allow patients to directly report their experience with disease symptoms or well-being, without modification by a healthcare team member. PROMs can provide clinically meaningful and patient-centered insight into screening, diagnosis, and response to treatment.

PROMs are particularly relevant when assessing health issues for which the patient is the best source of information. For example, a measure of forced air volume is necessary to diagnose certain lung conditions; however, this physiologic measures does not provide information about whether patients can perform the physical activities they enjoy (e.g., jogging).

PROMs are standardized assessments of patient experience with symptoms, often measured repeatedly over time, to evaluate the impact of treatments or progression of disease. PROMs are, therefore, developed through iterative psychometric and clinical content review and validated among target patient populations to evaluate their psychometric properties before use.

PROMs cover a variety of clinical domains, including physical function, mental and emotional health, social functioning, and health-related quality of life (HRQoL). This data can provide critical insight into the overall well-being of individuals and their response to treatment. It is also important to note that PROMs are distinct from other types of patient-reported health data (e.g., past medical conditions or family health history) or from patient-generated health data (e.g., tracking physical activity or number of hours slept per day).

The growth of PROMs in healthcare delivery

Originally developed to support clinical research, PROMs provide teams with three primary advantages (ISOQOL, 2015; Snyder et al, 2017; Wu et al, 2013):

  • better standardized assessments of patient symptom experiences
  • remote monitoring and tracking of patient health status, minimizing the burden for in-person clinical evaluation
  • assessment of patient-centered outcomes and quality of life

As the breadth of validated PROM measures continues to expand, a variety of stakeholders—including patients, providers, healthcare administrators, population health teams, and payers—are increasingly interested in utilizing PROMs as part of routine clinical data gathered to inform care delivery. Beyond point of care use, federal and local policies are also incentivizing the use of PROMs to support value-based models of care delivery and quality monitoring (Person and Family Engagement Strategy [CMS] nd; Promoting Interoperability Programs [CMS] nd; Patient-Reported Outcomes [NQF] nd; Freel et al, 2018; Basch, 2017).

PROM data enables patients and providers to understand multiple dimensions of health and role functioning (Lavallee et al, 2016). Even further, advancements in health IT have driven the electronic capture of PROMs, or ePROs, in clinical care (see Figure 1B) with the goal of:

  • improving the efficiency and quality of patient data
  • improving care quality and delivery
  • managing population health outcomes

With the continued rise of ePRO use in clinical care, there is a need for sharing best practices around how ePROs are governed, integrated into clinical care, and able to facilitate diverse reporting and decision-making needs (Austin et al, 2019).

Figure 1B: Drivers of ePRO use for clinical care by stakeholder group
Patient, Provider & Care Team, Health System, Payer & Policy

Innovation, technology, and continuous learning

As the use of ePROs in clinical practice has evolved, so has the technology available to support ePRO data collection and review. A variety of third-party apps, web-based platforms, and electronic health record (EHR) functionality have emerged, promoting new modalities for engaging users in ePRO data collection and review and identifying significant challenges related to workflow and interoperability. One example includes efforts by EPIC and Cerner, the two largest US-based EHR vendors, to work with the Patient-Reported Outcome Measurement Information System (PROMIS), which supports ePRO measurement across a range of important health domains. Increasingly, PROMIS measures are included in existing EHR questionnaire sets to support the expanded use of these measures in clinical care (see Technical ePRO Guides in the Tools and Resources section for more information on EASI-PRO implementation) (Patient-Reported Outcomes Measurement Information System [NIH] nd; Seamless integration of patient-reported outcome measures in electronic health records [EASIPRO] nd).

The Technical Primer included in this section provides additional background on how health systems should think about integrating ePRO technologies into clinical settings. The integration of ePROs into clinical practice will illuminate many sociotechnical complexities, including the innovative use of technology, changes to workflow and patient-provider decision-making processes, and downstream impacts on healthcare policies and payment.