PROs & PROMs: Understanding Patient-Reported Outcomes Measures

Benefits of Collecting PROs

Collecting PROs is different from collecting patient experience data or clinical outcome data because it views how a treatment or service impacted the patient through the patient’s eyes. As opposed to measuring the blood glucose level of a patient with diabetes, PROs look at how that patient feels after changing disease management course, for example.

This shift in mindset is essential as healthcare embraces principles of patient-centered care.

“Ensuring that patients and families are engaged as partners in their care—one of the CMS priorities— can also be an effective way to measure the quality of patient care,” CMS says in its write-up about PROs. “Although patient reports of their health and experience with care are not the only items that should undergo measurement, they are an important component.”

PROs may be a way for healthcare providers to tailor a treatment course to a patient’s personal needs and priorities, particularly by zooming in on functional status and quality of life.

These measures also have a home in medical research, particularly the clinical trial process. PROs can help researchers identify when a certain drug or intervention is not working or would have side effects that are not feasible for everyday living.

Some data has shown that using PROMs has promise. One study from the Patient-Centered Outcomes Research Institute (PCORI) assessing a program implementing PROMs in cancer centers showed that they are acceptable to patients.

Nearly all (96 percent) of patients who completed a PROM survey said the survey was easy to complete, and 97 percent said the PROM was easy to understand. Around three-quarters of all patients completed the PROM without a reminder, while 14 percent completed the PROM after a nudge.

The researchers didn’t get enough patient responses to use PRO data to compare outcomes at different cancer centers, but they did say the data was useful for clinicians to assess whether chemotherapy was effectively targeting a patient’s cancer.

Challenges of Collecting, Using PROs

Despite the many benefits, healthcare organizations don’t have complete PRO collection and utilization.

Previous reports have indicated that most providers agree that PROs can be helpful in patient-centered care, but technology limitations and poor access to resources get in the way of collecting PRO data. Not every healthcare organization has implemented PROMs into their patient portal, for example, and without administrative buy-in, it can be tricky to gain momentum in patient response rates.

An April 2020 study published in JAMA Network Open showed that organizations with higher PRO collection rates were more likely to have clinician training in collecting PROMs and more likely to support administrative leaders in gathering patient responses.

“A key takeaway from our findings is that health care systems interested in collecting PROs should focus primarily on engaging physicians in the value of the process and training them to be adept at the collection of PRO data,” the researchers wrote in the study. “Additionally, administrators should not be ignored in the process, as their engagement and oversight of collection numbers was strongly associated with success.”

But even when response rates are sufficient, healthcare providers aren’t taking the next step to use PRO data in their clinician decisions.

One 2022 study looking at an orthopedic medical center in Minnesota showed that even when PROM response rates are high—over 50 percent from baseline to discharge—just around 1 percent of doctors in the organization used the data.

The study didn’t identify why providers didn’t use PRO data, but the high patient response rates did rule out technical issues and non-response bias. The researchers suggested that further, system-wide investigations need to pinpoint other challenges providers have with PRO data.

Types of PROMs

PROMs refer to the instruments used to collect PRO data. PROMs usually come in the form of a survey for patients to complete. The three most common PROMs include:

• PROMIS: The Patient-Reported Outcomes Measurement Information System is funded by the National Institute of Health (NIH) and looks at patient-reported health status.
• Medicare Health Outcomes Survey: Medicare Advantage plans use HOS to assess health status and inform quality improvement projects, plan accountability, and public reporting for MA plans.
• FOTO Patient Outcomes: These surveys look at functional status of patients who received outpatient rehabilitation services. Organizations survey patients upon intake, during treatment, and upon discharge to document change over time.

That said, PROM development is an ongoing process, and different entities ranging from advocacy and research firms to individual providers are continually building their own PROMs. PROM developers should remain mindful of existing PROMs that apply to their intended outcome measure. Other considerations might include data collection method, content of PROMs, phrasing of PROM questions, and the logic or layout of the PROM.

In addition to the actual content and strategy of the PROM, developers should make psychosocial considerations, like health literacy and English language proficiency. Developers might consider writing PROMs at a middle-school reading level and offer the tool in multiple different languages with considerations for visually impaired individuals.

Finally, PROM developers should consider proxies for PROM completion. Some patients who received treatment or services may not be able to fill out PROMs themselves; this is very common in pediatrics, but is also applicable for senior patients whose care is managed by adult children or other family caregivers.

The idea of a proxy PROM response is complex; how can a caregiver truly capture a patient’s symptom burden? The data on the validity of proxy responses is nascent, but one study from the Regenstrief Institute indicated that they could be useful.

The researchers recruited 188 caregiver-patient pairs to both fill out different PROMs and compared answers.

Proxy caregivers aligned with patient responses about half the time, with the researchers observing more accuracy in pain and symptom burden domains than in depression domains. Caregivers were also more likely to accurately gauge patient symptoms when those symptoms were moderate; caregivers tended to overestimate when the patient reported negligible issues and underestimate when the patient reported extreme issues.

More research is still needed to understand how proxies can serve as true stand-ins for PROM completion, but in the meantime, the researchers posited that proxy PROMs can serve as a good complement to PROMs completed by the patients themselves.

What Are PRO-PMs?

According to CMS, PROMs themselves are not enough to demonstrate quality of care; rather, PROMs can be used for patient-reported outcomes-based performance measures (PRO-PMs).

“A PRO-PM is a way to aggregate the information from patients into a reliable, valid measure of performance at the measured entity level, e.g., clinician,” the agency says.

A PRO-PM might be functional status after a knee replacement or pain after back surgery. Ultimately, the PRO-PM is any performance measure that’s based on PRO data, according to NQF. Organizations that might use PRO data for PRO-PMs include long-term care providers, hospitals, provider practices, and accountable care organizations.

"NQF endorses PRO-PMs for purposes of performance improvement and accountability; NQF does not endorse the PROMs alone,” the organization says. “However, the specific PROM(s) used in a PRO-PM will be identified in the detailed measure specifications to ensure standardization and comparability of performance results.”