Make Patient-Reported Outcomes Part of Routine Cancer Care

Fran Lowry

January 11, 2017

Patients' symptoms and physical impairments often go undetected by healthcare providers, particularly between clinic visits, and as a result opportunities to intervene and alleviate suffering are missed.

A potential solution to this problem is to have patients answer questions about their symptoms electronically, either via the Internet or through their smartphones, at or between visits, a cancer researcher suggests in a perspective published in the New England Journal of Medicine.

Their answers could then be transmitted into the electronic health record (EHR), and clinicians could receive automated notifications about worrisome symptoms or functional issues, writes Ethan Basch, MD, director of the Cancer Outcomes Research Program, Lineberger Comprehensive Cancer Center, and professor at the University of North Carolina, Chapel Hill.

"We miss a lot of what's happening with our patients, both in clinical trials and when we're treating them with routine care. There is a lot of quiet suffering, and there are a lot of clinically relevant details that we just miss, that are actionable," Dr Basch told Medscape Medical News.

Abundant research shows that despite the way doctors connect with their patients, they miss more than half of what people are experiencing, Dr Basch said.

"There are a whole host of complicated reasons for this. People may forget what they were feeling 3 weeks ago after they got their chemotherapy, or we talk about other things, like the scans or about their vacation. Another thing that happens frequently is a clinician will walk in the room, stand at the door, and do what we call the 'eyeball test' and move on if the patient appears to look well. We don't specifically ask about their nausea, diarrhea, neuropathy, fatigue, functional status. We simply don't do that. So we lose a lot of granularity in what people are experiencing," he said.

Incorporating data from patient-reported outcomes (PROs) into clinician's EHR notes can improve patients' quality of life, enhance patient-clinician communication, reduce emergency department use, and lengthen survival among patients with advanced cancers. PROs can also play a role in shared decision making, Dr Basch noted.

Some centers, notably Dartmouth-Hitchcock Medical Center, Cincinnati Children's Hospital, The Cleveland Clinic, and Memorial Sloan Kettering Cancer Center, have made examination of PROs a part of usual care delivery.

But despite its proven benefits, the practice is not routine because of three key barriers, Dr Basch said.

The first is technological.

"The most commonly used EHR vendors in the United States (Allscripts, Cerner, and Epic) have only rudimentary ability to collect PRO data," he writes.

"They are really not built for usability and rapid use, they are very cumbersome. They are systems for documentation and billing, not systems for making doctors or nurses more efficient. Also, the companies that develop EHRs have not been patient-centered in their approach, so it leaves the patient voice out. Some of them have developed some patient portal applications but they're very clunky, and most patients are not using them," Dr Basch said.

The second barrier is reimbursement.

"The Centers for Medicare & Medicaid Services (CMS) offers modest per-member-per-month payments for remote monitoring of chronic conditions but the incentive is modest…. I believe that CMS and the ONC [Office of the National Coordinator for Health Information Technology] should convene an expert panel to assemble salient evidence and outline a path for creating reimbursement-based incentives in this area," he writes.

"These systems cost money to set up and to accommodate. There needs to be a business model for doing that. It would save money in the long run because there would likely be fewer emergency room visits and patient outcomes would improve. It would make sense to pay for this because it adds value," Dr Basch said.

The third barrier is the lack of standardized methods for integrating PROs into clinical workflow.

"Medical providers need to find ways to efficiently incorporate monitoring of patient-reported symptoms into their workflow, and the reporting questionnaires that are used need to be standardized," he said.

Dr Basch said he is hopeful that ways to overcome these barriers will be found soon.

"There are many institutions around the country that are starting to collect patient-reported outcomes routinely. I just got off the phone with two very large major health systems that are looking to roll out patient-reported outcomes across their entire enterprises. They were asking simple questions, like how to get the questionnaire into the EHR, how to get the questionnaire to the patient, how does the nurse look at the questionnaire in the EHR. There are many institutions that really want to do this, but there are these technical barriers that stand in the way that really do need to be addressed."

Dr Basch has disclosed no relevant financial relationships.

N Engl J Med. Published online January 12, 2016. Abstract

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