What the Heck is a Lung Cancer PRO?

Once I got involved with patient advocacy, it quickly became apparent that my initial lack of information about lung cancer was definitely the norm, not the exception. The good thing is that there is plenty of opportunity to learn and to share my experiences with laypeople and researchers alike.

What are patient-reported outcomes?

Several weeks ago, I was invited to participate in a roundtable about Patient Reported Outcomes (PRO) in lung cancer. I was one of only two patients present in a group of roughly 40 individuals representing lung cancer non-profits, pharmaceutical companies, clinical providers, and the FDA, NCI and other government institutions.

When I read through some of the preliminary material from The Cancer Letter, I immediately noticed the subhead of the first report titled "Do Patients Know Best? Industry, NCI Committing Dollars to Studying Patient-Reported Outcomes." It said "Researchers are coming to the conclusion that cancer patients are the best authority on how therapies affect them."¹ As you can readily imagine, my initial response was a giant "Duh!"

No one knows a patient better than themselves

I've said from day one that no matter how much I may try to relate how I feel to my doctor, it will still be second-hand information that may or may not be accurate or complete in the report he writes. Not only that, but what about all the days in between doctor visits when he hasn't asked or learned how I feel?

The report quotes Ethan Basch, director of the Cancer Outcomes Research Program and professor of medicine and public health at the UNC Lineberger Comprehensive Cancer Center, as saying "There was previously a bias among some investigators that 'I know better than my patients,' or that we can't really trust patients to be reliable, or that patients will be too ill to report their own toxicities, but empiric data show that none of that is true."¹

A better understanding of patient experiences

In a related interview, Dr. Basch said, "If you think about the downstream consequences of missing many symptomatic adverse events our patients are experiencing, when an investigator or regulatory authority is reviewing data from a trial, they are going to have a substantial underestimation of the risk of the product."¹

I learned that gathering PROs should help clinicians and researchers understand how well patients are tolerating a drug so that they can make better decisions about amount and/or frequency of dosing, as well as the risks vs. benefits of a given drug. Dr. Basch said, "we as clinicians miss about half of our patients' symptoms. This means that in clinical practice, many of our patients are quietly suffering at home without our knowledge."¹

What surprised me as I participated in the roundtable discussion was that something that seemed as though it should be so obvious as to not require research at all actually is far more complex than I would have guessed. Not only is the element of collecting all of the data from patients a major effort, particularly because electronic health records are not standardized and apps for collecting PROs are not in common use, at least yet, but knowing the right questions to ask and how to interpret the data presents challenges.

No two patients are exactly alike

For instance, when the other patient in attendance with me at this roundtable and I were asked about our ultimate treatment goal, our answers were almost 180 degrees opposite of each other...and they were both perfectly legitimate answers. If two people were that disparate in answering this one simple question, imagine that multiplied by thousands of patients over dozens of questions.

I left this gathering feeling glad to have been invited to share a patient perspective with people who are working hard and are sincere in their efforts to understand and utilize the patient voice. This has been far too long in coming, and it most definitely needs to proceed...and succeed. But, I also came away with a new recognition of the complexity of something that on the surface seems like it should be so darn simple. That's kind of frustrating in a way. Nothing in cancerland is simple. And so we soldier on.

Editor's Note: We are extremely saddened to say that on June 8, 2019, Karen Loss passed away. Karen was a valued member of the lung cancer community and an incredible advocate and avid writer. She will be deeply missed.