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Are Proxy, Caregiver Responses for Patient-Reported Outcomes Valuable?

Researchers found that proxy or caregiver responses to patient-reported outcomes are useful for enhancing or standing in for reports from incapacitated patients.

Proxy reports are a good stand-in for patient-reported outcomes when a patient can’t report their own symptoms or is otherwise incapacitated, researchers from the Regenstrief Institute wrote in the Journal of Patient-Reported Outcomes.

These findings come as more healthcare professionals and medical researchers seek to use PROs in decision-making. Ensuring clinicians are aware of a patient’s symptoms is integral to making sure they select the best treatment course. This is particularly true for factors like pain levels or psychological symptoms, which require a patient self-report.

“Unlike blood pressure and blood sugar, symptoms like pain, depression or anxiety can’t be objectively measured,” Kurt Kroenke, MD, a faculty member at the Regenstrief Institute and IU School of Medicine who led the study, said in a statement.

“Our group is very interested in symptoms – signs you can’t measure with an X-ray or a lab test. The only way to determine severity is with validated scales and if patients can’t report for themselves, then the proxy’s report is an important tool available to the clinician treating the patient.”

The researchers defined a proxy as a caregiver, like a family member or home health aide, who was authorized to speak on a patient’s behalf regarding the patient’s symptoms. Proxies can provide insight into a patient’s symptoms regardless of circumstance but are particularly helpful when patients are not able to articulate their symptoms, such as if patients experience cognitive impairment.

And these proxy reports are pretty reliable, the researchers found.

Kroenke and colleagues looked at 188 patient-caregiver pairs, as well as 200 patients without identified caregivers, and assessed how well patient- and caregiver-reported symptoms lined up. The researchers looked at PROs such as the PHQ-9 depression, GAD-7 anxiety, PEG pain, and SymTrak multi-dimensional symptom and functional status scales.

Concurrence happened about half the time, with patients and caregivers aligning more frequently on PROs related to pain and functional status than on PROs related to depression and anxiety.

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.

The stress levels of the caregiver also played a role, with the researchers adding that caregivers experiencing disproportionate stress also tended to over-report patient symptoms. This finding supports calls to provide better family caregiver engagement and support.

Although the results weren’t a slam dunk, the researchers said they showed promise for filling in some PRO gaps. When looking at group averages, Kroenke and colleagues found that patient- and caregiver-reported outcomes were just about in line with each other because over- and under-reports tended to cancel one another out.

In other words, caregiver proxies can be effective at gathering patient-reported outcomes. In fact, the researchers posited that proxy reports can complement PROs.

“Although we presume that in patients with the capacity to report for themselves, patient report is foremost, it is also possible that the perspectives of persons close to the patient may complement rather than substitute for or replace self-report,” the research team wrote.

“Although patients should in most instances still have the primary voice in articulating their level of suffering, distress or impairment (hence the term patient-reported outcomes), this does not preclude proxies (who know and observe the patient) from having a valuable vantage point that might further inform evaluation and treatment.”

But there were some spots where proxy reports proved imperfect, or at least called for further investigation. For one thing, the study only included cognitively intact adults over age 65; application with adults experiencing cognitive decline could yield different results.

Nevertheless, Kroenke and team said proxy-reported outcomes may be a good aspect of family engagement and family-centered care.

“Similar to what occurred during the pandemic, when we used rapid COVID tests rather than the more accurate PCR tests to make decisions about travel or attending events or other issues, because rapid tests were the best we had on hand, when patients can’t complete a symptom scale, proxy reports, while not the best, are the best available and provide valuable information,” Kroenke said.

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