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Q&A With Dr Thomas LeBlanc: The Value of ePROs in Oncology

Surabhi Dangi-Garimella, PhD
The FDA has recognized the need to include the patient's voice in the drug development process. The question is: what is the best way to do this?
Incorporating PROs in the clinic will require buy-in at every level—from not only the patients, but the clinicians who are there in the trenches. When I am in my clinic and I am running an hour late through no fault of my own—maybe the lab is running behind or I had a patient who was very sick and I needed to spend some extra time with them— the last thing that I am going to do then is spend extra time on something else that isn’t required for me to take care of a person. If the change does not save time or is not well-integrated into people’s work flows, then it will be perceived as difficult or not helpful, and people will rally against it. This is especially true if they don’t recognize its value.

An ideal example of this is symptom screening. A part of what clinicians do when they see patients is a “review of systems” assessment, which includes queries on di erent types of symptoms and issues and about whether they are bothering a patient. Well, PRO systems can, and should, do that, but that would mean that the PROs would have to be collected in the waiting room or before a patient’s clinic visit, and then be presented back to the clinician in a useful way that doesn’t create confusion, slowdowns, or extra work.

However, if someone hands them an iPad and asks them to fill it out while they are in an exam room, then nobody can see them until they are done, and that holds up other patients from being put in the room and slows down clinicians—it’s not going to fly. But if PROs are collected when the patient is sitting in the waiting room, and then integrated into the EHR in a way that also pulls it into their clinical documen- tation so the clinician has all of those data at their ngertips during the examination, and saves time when writing their notes, then you have streamlined care. It would improve e ciency as well as the quality of the information.

We know from other studies that patients are much more accurate about reporting their experience of illness than doctors or other clinicians are, who to some degree are guessing at what they think people are going through. It’s important to recognize that. Patients are the experts on their own experiences.

EBOTM: Do you think the physician on-boarding with respect to PROs can be spearheaded by payers?

LeBlanc: That’s a tough question. There has been some discussion about including PRO measures as part of value-based care in pay-for-performance initiatives. I’ve heard more about these things in surgical settings, such as postoperative clinics, looking at different PRO measures around functional status and quality of life as hallmarks of whether you provided good care. But this could go wrong, in some unfair ways. Imagine you see a patient who has a joint replacement and then they just don’t do their rehabilitation program, and then end up with poor mobility and maybe pain; that doesn’t mean that you provided bad care, it means the patient didn’t do their part. That’s an instance where you can see the folly of a PRO measure being related to reimburse- ment, or perceptions of value of care. Is it reason- able to do that kind of assessment and then hold physicians accountable? I’m concerned about that possibility and what that might look like. Similarly, we might expect PROs to worsen steadily over time in people with advanced cancer, and it doesn’t mean we provided bad care but rather that the disease and its treatments take a toll over time. So, what might be the right PROs to track in a pay-for-performance kind of way? I’m not sure.

On the other hand, there may be instances, say in the cancer care setting, where we might think it’s more agreeable to use more specific PRO measures around what a person is going through—for example, a measure of nausea or vomiting in people who are getting chemotherapy. There are standard protocols for preventing chemotherapy-induced nausea and vomiting, plus we now have really effective drugs. While we probably won’t get to a zero rate where nobody has either of those side effects, sometimes we may not do as well as we could or should be doing to prevent them. If we actually measured the rate of these side e ects and if practices were held accountable to that, I can guarantee you they would pay more attention to it, and get much better at addressing the issue than they are now. That is 1 example where a very focused measure could be quite helpful and very appropriate.

EBOTM: What are your predictions for the growth of this field?

LeBlanc: Overall, PRO measures are very useful tools for amplifying the patient’s voice as part of their cancer care. That’s a voice that often gets muted and sti ed in how we take care of people. We know that our healthcare system is not set up to be patient-friendly—it’s built around clinicians and nurses rather than patients, ultimately.

Inclusion of PROs into routine care will improve patient care by increasing emphasis on the patient experience—what they go through, how they feel, and how they live when they are not in the clinic. Most of these people’s lives, when they are dealing with something like cancer, is spent mostly outside of the clinic; we only see them a few days a month. What’s going on during these other times, that’s where PROs can be very helpful in amplifying the patient voice and making us pay attention to the patient experience in ways we unfortunately tend not to in routine cancer care today.

References

1. LeBlanc TW, Abernethy AP. Patient-reported outcomes in cancer care— hearing the patient voice at greater volume [published online October 4, 2017]. Nat Rev Clin Oncol. doi: 10.1038/nrclinonc.2017.153.

2. Basch EM, Deal AM, Dueck AC, Bennett AV, Atkinson TM, Scher HI. Overall survival results of a randomized trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. J Clin Oncol. 2017;35(18 suppl). doi: 10.1200/JCO.2017.35.18_suppl.LBA2.

3. Basch E, Deal AM, Dueck AC, et al. Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. JAMA. 2017;318(2):197-198. doi: 10.1001/jama.2017.7156.
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