What If Outcomes Included What’s Most Important to the Patient?
istorically, we've focused on survival in cardiovascular disease, whether that be surviving an intervention, or ensuring that a treatment prolongs survival. As treatment options expand, we are learning that what matters most to patients is typically their quality of life. Patients want to know not only how the treatment will extend their lives, but how it will affect their ability to be active and enjoy their lives. But how do you assess quality of life in a clinical setting?
Psychometric science, an area of study interested in objectively measuring various psychological states, has a number of tools that help clinicians more objectively assess a patient’s quality of life. We call these tools patient-reported outcomes. At University of Utah Health, mEVAL is the system we use to collect and monitor those outcomes.
Patient-Reported Outcomes Improve Clinical Decision-Making
In the past, patient-reported outcomes were mainly used in clinical trials at the behest of the FDA (Food & Drug Administration), which uses the data to determine how a treatment affects quality of life. Patients in these trials filled out long paper forms that were scored in a data coordinating center. Only those running the trial saw the results, and only for composite groups of patients. Technology has advanced, and now it is possible for patients to complete these tools electronically with immediate scoring.
Our teams (Utah’s Cardiovascular Center with support from the Medical Group’s analytics team) have been working together for three-and-a-half years to implement patient-reported outcomes so clinicians can see individual patient data and personalize their approaches. Patients complete the measures electronically, and then the data is uploaded, scored, and integrated into the electronic health record. The clinician can see the results instantly so the data are relevant to the individual patient.
Cardiovascular treatments are advancing in such a way that there may be two or three treatments available for the patient. This wasn’t always the case—treatment options used to be more limited, often with only a single treatment available. Since there are trade-offs with any treatment, mEVAL helps patients make the best treatment decision by balancing information about survival prognosis with the ability to engage in the activities most meaningful to them. In this way, patient-reported outcomes inform which treatment is consistent with our patients’ desired quality of life.
PROMIS
Stands for Patient-Reported Outcomes Measurement Information System (PROMIS)
The PROMIS measure, one of several assessments used in mEVAL, measures physical function. Nationally, the average score for physical function is a 50. Among heart failure patients at the U, the average is 39—unsurprising given that heart failure patients have less physical function. We use new patients’ physical function scores to understand how a patient is doing relative to other patients within her same medical cohort.
Connecting Individual Patient Care with the Big Picture
1. Patients and heart failure
With heart failure, patients often take a combination of medications. Clinicians use patient-reported outcomes to show patients that treatments are making a difference and to encourage compliance. Generally, patients remember about one week or so of their own health. Patient-reported outcomes provide longitudinal understanding.
2. Generating hypotheses
We can generate hypotheses about the timing of therapies. A project based on this concept received an award from the American Heart Association as a part of the Strategically Focused Heart Failure Network initiative. One of the three sponsored projects is using patient-reported outcomes to predict patient survival and quality of life.
Patient-reported outcomes, when combined with clinical outcomes, lead to better patient care, reduced costs, and increased value for the health system, the clinician, and the patient.
Interested in pursuing mEVAL for your own practice? Contact Medical Group analytics.
Patient Reported Outcomes (PROs) Conference 2019
The first annual U of U Health Patient Reported Outcomes (PROs) Conference was held Thursday, May 23, from 8:30 - Noon in HSEB. The program was designed to to engage local providers in PROs work currently being conducted within our health system, as well as raise awareness of important work being done at the national level.
Video of conference proceedings is available to U of U Health employees here.
Josh Biber
Josef Stehlik
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