What Matters Most to Oncology Patients?

Lidia Schapira, MD; Ethan Basch, MD


July 22, 2019

This transcript has been edited for clarity.

Lidia Schapira, MD: I'm Lidia Schapira, associate professor of medicine at Stanford University School of Medicine. Joining me today is Ethan Basch, professor of medicine and public health at the University of North Carolina in Chapel Hill and director of the cancer outcomes research program at the Lineberger Comprehensive Cancer Center.

Your name is almost synonymous with patient-reported outcomes (PROs). As I understand, PROs were first thought of as a mechanism for bringing the patient's voice into the conversation and into research. Tell me about how they evolved.

Ethan Basch, MD: In general, PROs were previously referred to as "quality of life," a field that you and I both have been involved with over the years. Many of the questionnaires or approaches for assessing quality of life, or patient symptoms, were developed for clinical trials—to help us know, for example, whether a treatment for metastatic prostate cancer was improving pain related to castration-resistant metastatic disease. But as these tools evolved, it occurred to some that these assessments might actually help with routine management of symptoms as well.

Schapira: How do we incorporate these patient-reported outcome instruments into routine follow-up of a patient in the clinic?

Basch: There are a number of different ways that are appropriate to various contexts. But in general, in medical oncology or in radiation oncology settings, electronic tools have been used to send questionnaires to patients via a text message or an email to go online for a very brief questionnaire between visits. These let the practice know about key symptoms, such as pain or nausea or constipation—the kinds of symptoms that are actionable for us as oncologists or as providers, but also symptoms that can really get patients into trouble.

Two thirds of patients have symptoms that meaningfully interfere with their lives.

An alternative is the in-clinic approach, and that's also quite commonly used. In this approach, tablet computers are available in the waiting room, and the person at the front desk may bring them to a patient to fill out the questionnaire. This information is then available to the care team at the visit.

Schapira: This seems like an opportunity also to find out what the patient's quality of life is like between visits. We often ask patients about symptoms on the day they come to see us, perhaps for treatment, when most of the toxicity of the previous treatment may have resolved. But do clinicians in practice use these instruments on day 8 or day 15, so that they actually can see what the quality of life has been for the patient during those interim times?

Basch: One of the reasons we have seen so much interest in using this electronic symptom-monitoring approach in our patients during treatment is that patients receiving cancer therapy are highly symptomatic. The vast majority of people have symptoms, and about two thirds of them have symptoms that meaningfully interfere with their lives. They get dehydrated, have pain crises, or have dyspnea crises that lead them to the emergency department (ED).

On top of that, a lot of research demonstrates that we as providers miss more than half of our patients' symptoms.[1,2] Even when we talk about symptoms in the office for various reasons, this information doesn't rise to the top. As an oncologist, it's not that infrequent that a patient will come in to see me and his daughter will say, "Dad was in bed for 2 weeks after chemotherapy," and I say to the patient, "Mr Jones, why didn't you call me?" And he'll say, "I didn't want to bother you, Doc." Or sometimes people will say, "I thought that was normal," or "I thought that was just part of the treatment."

There are all kinds of barriers. People don't want to let their doctors down; they don't want to admit to having troubles. All kinds of dynamics are responsible for us not understanding what's happening with our patients.

When I started, it was not uncommon for oncologists or clinical trialists to say, 'This will never work.

For this reason, interest in monitoring people between visits using these electronic approaches has grown. During active therapy with immunotherapy or cytotoxic or targeted therapy, in general, people are asked to report about every week. With some approaches, reporting is timed to the chemotherapies within a window after receiving treatment. Because there is so much variability in how cycles work and because that usually requires tethering to an electronic health record (EHR), the every-week ongoing approach seems to be pretty effective.

Patients may get a prompt to self-report, and if they report something that is severe or worsening, the system will send a message, usually to a nurse who manages symptoms. Then, that nurse can react to that information.

Schapira: So a lot of steps need to be in place for this to work: the mechanism for pushing these out; a portal for the patient to send the message back; and a way for it to be incorporated into a dashboard or a workflow that then triggers a timely response by a clinician. I imagine there may be some problems or issues for many practices to implement this complex system. What is the state of the art for implementing this in the community?

Basch: As with any change we make in practice, these new value-based care approaches that try to improve the quality of the care we're delivering and the patient experience require effort. In the case of patient-reported outcomes, it involves a technology lift and a modification of workflow, and of course, educating providers and a little culture change.

But as providers, our practices are accustomed to this kind of thing. We make changes all the time. Sometimes, they're more painful than others: for example, EHR implementation. Sometimes, they're easier. In this case, this is very much in keeping with the mission of our practices—to improve the lives and the experiences of our patients. In addition, we know that these interventions reduce ED visits and hospitalization, and they lengthen the time that patients tolerate chemotherapy. There are a lot of benefits, so I believe it's worth it in this case.

It turns out there is tremendous enthusiasm.

But you are correct: It requires having a technology solution that would either mean working with a company or a vendor that provides PROs—many are out there—or doing this through the EHR. Many EHR systems include a PRO functionality.

But it also means figuring out who's going to get these alerts, who's going to get these reports, who's going to discuss this with the patient, and who's going to react. This generally requires piggybacking on top of the way we already manage symptoms. Usually, that may be related to the telephone triage approach, and oftentimes it's nurses who oversee that, but it varies from practice to practice. So, a bit of thoughtfulness is required, but it's quite feasible.

Schapira: What do patients and family caregivers say about this?

Basch: When I started becoming involved in this work, it was not uncommon for oncologists or clinical trialists to say, "This will never work," because patients are too sick, or they're too well, or they're not interested. There's a reason that we as oncologists take on this role of trying to figure out what the symptoms are without asking the patients directly; it's because "it's just not going to work."

But it turns out that not only is it highly feasible, with the vast majority of patients being willing and able to do this, but there is tremendous enthusiasm. Many studies have been done with interviews and surveys of patients using these approaches, and it turns out that most patients feel more engaged in their care, feel more cared about, feel that they're a part of the process, feel listened to by their team, and feel that their conversations with their doctors and nurses are improved. So there is generally a very high level of enthusiasm. It's not universal, of course, as with anything, but the majority of people like this.

Schapira: I imagine it can also help the family caregivers because they can perhaps prompt the patient to be more forthcoming in reporting symptoms. So it seems one of the intended or perhaps unintended consequences is that it improves communication. Do you think it also perhaps provides an opening for talking with patients when you actually see them in the office or clinic about their goals and what's important to them?

Basch: I believe so. The substance or the quality of conversations with patients have been found to be much more in line with the things patients care about and what is affecting them. Thus, there is much more efficient communication with patients because the things that are on the patients' mind are foremost, and you can start there. It's been found that there is no increase in the duration of clinic visits, but the content of the clinic visit is much more meaningful to patients.

And you're right, these systems don't only collect information about symptoms; they now are starting to collect information about financial toxicity, transportation problems, barriers to access, and all sorts of things we all know are challenges for our patients and interfere with our ability to be effective as providers. So a secondary effect is that this provides an impetus to discuss these important areas with our patients.

Schapira: How can a community oncologist or practice know which instruments to choose to insert into their systems?

Basch: Many of the available packages generally offer a set of items. Most of the systems collect a core set of symptoms that are the most common or troublesome symptoms, and many of them will include other areas, too—for example, patient-reported ECOG (Eastern Cooperative Oncology Group) performance status, dehydration, or falls.

Packages have also been created for the postoperative setting. We haven't talked about that, but there are questions that ask about bleeding, wound problems, or fever. So depending on the context, generally some expertise comes along with it. That said, this field is still evolving and emerging. There is no true standard yet, and so I believe there will still be some variability.

Schapira: Where do you see this going? We talk about how new wearables or artificial intelligence may help us capture more data from patients. How could that affect the collection of data and reporting of data through these PROs?

Basch: First, I believe there are various vehicles by which these systems will start to become more commonly used: for example, in the setting of alternative payment models or innovative ways of delivering value-based care. These approaches will become more widely used and integrated with other interventions, such as navigation or care coordination.

As this field evolves, you're absolutely right, new technologies will bring us to version 2.0, 3.0, and 4.0 of this approach. The way the field has developed thus far is quite rudimentary. Static questions that are the same ones asked every single time become uninteresting to the patient after a while—we know they do.

Some of the newer approaches are using Chatbox to have a more conversational or iterative approach. There is a beginning of some intelligence that can start to analyze at the individual patient level, to direct the questions to the most problematic issues. There is some intelligence around alerting, to use predictive analytics to figure out which patients are truly at risk of winding up in the ED or missing a dose of chemotherapy because of the constellation of different variables. Certain diseases, treatments, clusters of symptoms, economic status, or insurance status may put them at very high risk and can perhaps flag a navigator or care coordinator to reach out proactively.

And the wearables, which I know you and I are both interested in as a way to passively collect information, may be a better way of collecting performance status so that we really know how active our patients are.

Schapira: It's almost as if you can profile the patient, and from that, try to stay one step ahead of the problems by anticipating where they may run into trouble, pushing out some questions, and hopefully avoiding some of the unnecessary suffering and cost associated with cancer treatment.

Basch: If you think about it, this is something we all do intuitively in our minds all the time. We look at a particular patient and we think, "This person is not going to make it." Or, "We'd better give this person a call next week to see how they're doing." So we are risk-stratifying people by weighing variables all the time. This is a way of improving the precision of something that we already do as providers. We already manage symptoms, we try to meet the needs of our patients, we try to communicate well with our patients and we try to tailor what we do to the needs of an individual person—this is really just a way of being more scientific and systematic about it.

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