New Palliative Care Patient-Reported Outcomes Measures Launch

The American Academy of Hospice and Palliative Medicine (AAHPM) has finalized two patient-reported outcomes measures set to improve the quality of care delivered to folks in hospice care, the organization announced.

The PROMs—designed as part of the Palliative Care Measures Project funded in part by the Centers for Medicare and Medicaid Services (CMS) and in partnership with the National Coalition for Hospice and Palliative Care and the RAND Corporation—have been accepted by the National Quality Forum following a 30-day appeals process.

"Providing high quality and patient centered care is one of the core values of the Academy," Joe Rotella, MD, chief medical officer of AAHPM, said in a statement. "Improving the quality of healthcare delivery to patients with serious illness and their caregivers is a priority of The Academy and we are so excited for the opportunities that will exist due to these new measures."

The two approved patient-reported outcomes performance measures (PRO-PMs) assess:

• How much patients felt heard and understood, and
• If patients got the help they wanted for their pain

The first question has a few different components, AAHPM wrote in an implementation guide. Patients filling out PROM surveys will report whether they felt understood by their provider or team, whether they believed the provider or team had their best interests in mind, whether they felt seen as a person as opposed to a medical case, and whether the provider or medical team understood what was important to the patient’s life.

Already, AAHPM said hospice and palliative care providers have been receptive to the PROMs. During a one-month public comment period, 200 different stakeholders indicated that they were likely to use the measures. Eighty-three percent said they were very or somewhat likely to use the “feeling heard and understood measure,” while another 72 percent stated they were somewhat or very likely to use the “receiving desired help for pain” measure.

"AAHPM has put so much time into the development of these new measures and we are happy to share our work with physicians, nurses and other medical professionals," said Tara Friedman, MD FAAHPM, president of AAHPM. "These measures will directly impact the lives of so many and are a fantastic step for patient centered and focused care."

Patient-reported outcomes measures are important clinical quality measures because they assess how a certain treatment impacted a patient’s quality of life, something that is not always measurable using clinical metrics. Moreover, PROMs come straight from the patient, so they can help healthcare organizations in pursuit of delivering patient-centered care.

In the palliative and hospice care space particularly, collecting PROMs helps providers make patients comfortable as they near the end of life. PROMs are also helpful for healthcare providers working to fulfill patients’ wishes and treat them with dignity.

Separate data has shown that even speaking with family caregivers to collect PROMs data can be effective, although the AAHPM PROMs specifically exclude proxy responses from the denominator figure.

In July 2022, researchers wrote in the Journal of Patient-Reported Outcomes that proxy PROMs responses are an adequate stand-in when a patient is otherwise incapacitated. Concordance between patient and caregiver PROMs responses happened about half the time, with caregivers being better at assessing pain and functional status than anxiety or depression.

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, the researchers found that patient- and caregiver-reported outcomes were just about in line with each other because symptom 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 in the study.

“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.”