Defining, Standardizing, and Acting on Patient-Reported Outcomes in Cancer Care

Jaime Rosenberg

During a panel discussion on defining, standardizing, and reporting quality in cancer care during a National Comprehensive Cancer Network Policy Summit held September 12 in Washington, DC, it became clear that stakeholders of all backgrounds have set a focus on one type of metric in particular: patient-reported outcomes (PROs).

However, while all stakeholders can agree that capturing and acting on these measures is important, bringing the concept to life has proved much harder. Lawrence N. Shulman, MD, deputy director for clinical services, Abramson Cancer Center at the University of Pennsylvania, called it a “huge deficiency” in the healthcare system.

“I spend a lot of time looking at the National Cancer Database, and I have a huge amount of survival data—our ultimate outcome data—but currently, none of that is linked to PROs,” Shulman said. “We know that patient got treatment A or that patient got treatment B and they lived each 12 months; we don’t know anything about the quality of their life during that period of time.”

“As a nation, we need to get there,” he said, warning that it will take a fair amount of work. According to Shulman, the change is more heavily concentrated on the process side of things rather than the cost.

“I think the cost is acceptable, but clinics are all working 110%, and it’s just 1 more thing to do,” he explained, but added that it can be done.

At Penn, the team now measures PROs at every visit for patients with cancer, with a capture rate of more than 90%. The feedback gets inputted into the electronic health record in a structured format for providers to see at the time of the patient visit and to compare the measures with the treatment and outcomes of those patients.

What the team is starting to do now is differentiate the questionnaires that patients answer, which means customized reports for different disease types, where the patients are within the care continuum, and so on.

In the long run, Shulman hopes to see this be replicated across the country and for practices to be able to link PROs with a large data set like the National Cancer Database or Medicare Surveillance, Epidemiology, and End Results database.

Bryan Loy, MD, MBA, corporate medical director of Humana’s Oncology, Laboratory, and Personalized Medicine Strategies Group, agreed that the country is still in the early days of incorporating PROs into actionable information. Currently, Humana collects information on the patient experience through clinical programs or through complaints of the member experience. But, he noted the insurer is still on the front end of this.

Representing CMS, Reena Duseja, MD, MS, who serves as the chief medical officer of Quality Measurement and Value-based Incentives Group, reflected on the agency’s “Meaningful Measures” framework that it launched 2 years ago to make sense of the measures used in federal programs.

“As we were developing this program, one of the areas that we recognize and that we have gaps in is PROs, and since then, there’s been more emphasis in the agency in collecting outcome measures,” said Duseja. She explained that looking at the proposed measures on the consideration list for the agency’s programs, there has been a bigger presence of outcomes measures. Of these measures, a subset are PROs.

But Duseja highlighted an important challenge that makes it difficult to transform the healthcare system into one that fully incorporates and acts on PROs: the need for standardization.

Ronald S. Walters, MD, MBA, MHA, MS, Department of Breast Medical Oncology, Division of Cancer Medicine, MD Anderson Cancer Center, agreed, noting that PROs are collected from nearly every patient participating in a study and are beginning to be collected on patients in the clinic, but it’s not done in an organized fashion.

Walters elaborated more on the issue, explaining that while there are universal measures that apply to all patients, such as being able to work if they want and their overall quality of life, there are also more specialized ones that vary based on the disease type, the stage of cancer, and what matters to different demographics of patients. These latter measures, he explained, are the more controversial ones.

“We keep trying to come up with the nirvana list of things that apply to everyone and that just doesn’t apply to everyone,” he explained.

Instead, he said, there should be a program where there’s a mix of measures that include both universal measures and more specialized measures and in which providers can mix and match.

Duseja agreed, emphasizing that there needs to be flexibility and choice to allow providers to choose the measures that matter to them and their patients. But, there still is a need for standardization for there to be comparison across providers, and there’s a question of how to collect these PROs in a way that addresses this challenge, she said.
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