An unusual study gives a new twist to the idea of “patient-reported outcome measures” by training two patients to review doctors’ notes on treatment of a common orthopedic injury and then comparing their verdict to that of doctor reviewers. One type of disagreement stood out.
When the doctor group ruled that the treatment of a fracture near the shoulder joint was a failure, the patient group was likely to agree. But when the doctor group declared treatment victory, the patient group often saw the outcome differently.
“Physicians and patients demonstrated low levels of agreement…[about] a successful outcome,” concluded the study in the Journal of Participatory Medicine. Yet perhaps even more significantly, the doctors and patients even had trouble agreeing among themselves, with an outsider designated to step in and make a final evaluation for each group.
“There is not one singular definition of treatment success,” noted the researchers. “Instead, treatment success depends on an individual patient’s lifestyle and desired goals,” such as reducing pain or improving joint function.
A desire to understand how doctors and patients may disagree on defining a successful outcome is what prompted lead researcher Sarah B. Floyd, an assistant professor at Clemson University, to design a study that, if not unique (my strong suspicion), is at the very least highly unusual. The idea of looking at care “through the patient’s eyes” gave birth to the “patient-centered care” and “participatory medicine” movements of the 1990s and early 2000s. Building on that work, patients have more recently been trained to review their own medical records for accuracy and completeness as part of a push for “open notes.” In addition, patient-reported outcome measures (known colloquially as “PROMs”), which ask patients to directly report on pain, range of motion and other functions, are gradually becoming the “gold standard” in assessing orthopedic outcomes.
A New Twist on PROMs
But this use of PROMs dances to a different tune. Patients were not reporting on the the outcome of their own care, but examining that of other patients. The researchers selected 100 charts belonging to patients treated at Prisma Health in South Carolina for what is technically called a “proximal humerus fracture.” After review by physicians, the charts were divided by researchers into equal categories representing one of four judgments: treatment success; improvement of condition; deterioration of condition; and treatment failure. The charts were then shared with the patient evaluator team to collect and compare their judgment to that of the physicians.
A proximal humerus facture is the third most common fracture in older adults and is expected to become even more common as the population ages. The injury to the bone by the shoulder joint is often linked to either falls among the elderly, with osteoporosis a particular risk, or a high-speed trauma among the young.
Floyd told me she’d been reviewing progress notes for this type of injury as part of a larger study when she was struck by the strong presence of the patient voice. “The clinical note would contain rich details about the patient’s current symptoms and the ways in which those symptoms limited their desired activities,” she said. “’I can’t pick up my granddaughter.’ ‘This is what’s important to me that I cannot do. That’s why I am here seeking care and talking to you.’”
The University of South Carolina’s Patient Engagement Studio recruited patients who’d themselves suffered an orthopedic injury in the past, while Floyd brought in four orthopedic residents. Although both groups received similar one-hour training, disagreements persisted between the groups and among the reviewers in each. Nonetheless, researchers wrote that one striking finding was that “over half of the notes labeled as treatment success by orthopedic surgeons were labeled as treatment failure by patients. Patients appeared to have a more stringent definition of success compared with physicians.”
“Physicians and patients should be having open discussions about treatment expectations and what constitutes success for the individual patient,” Floyd said. “These conversations need to happen early on prior to initiating a given treatment pathway.” She hopes to continue with patient-reported outcome measures research examining the impact of that kind of change.
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