The Evolution of Distress Screening in Cancer Care

Michelle Riba, MD, discusses the evolution of distress screening in oncology and the move toward a collaborative care model to integrate psychosocial support into clinical practice.

In oncology, the focus has traditionally been on the physical manifestations of disease and the rigors of treatment. However, the psychological burden of a cancer diagnosis is often just as significant, influencing everything from treatment adherence to overall survival. Recognizing this, the field has undergone a transformative shift over the last 3 decades to elevate psychosocial health to a clinical priority.

In this discussion, Daniel C. McFarland, DO, and Michelle Riba, MD, explored the fundamentals of distress screening. Riba, a key contributor to the development of the NCCN distress guidelines, details the transition from fragmented psychiatric research to a standardized mandate that treats distress as the "fifth vital sign".

They also touched on integrated care models that include moving beyond parallel screening toward a collaborative care model that utilizes integrated medical records and multidisciplinary teams to treat the patient in their totality.

As cancer centers shift toward a population-based public health approach, this conversation highlights the necessity of destigmatizing mental health and ensuring that psychosocial care is an integral, measured component of every oncology appointment.

McFarland: What are the fundamentals of distress screening, and how did it come to be?

Riba: Jimmie Holland, MD, was the chair of psychiatry at Memorial Sloan Kettering [Cancer Center], and recognized that, first of all, the literature and the research that had been done prior to, let’s say, 1998 was not adequate to address some of the issues that we needed to know about, like, what was the impact of not addressing distress screening in the cancer clinic? What was the prevalence of various psychiatric conditions and patients coming to oncology care, and the differences between coming to a pancreatic cancer clinic vs a breast cancer clinic vs a leukemia clinic? The research was not robust in the 1980s and 1990s regarding this. As we began to understand the importance of recognizing mental health issues in the cancer clinic, cancer centers were growing, and the NCCN was being funded by the National Cancer Institute to look at cancers differently, using large data sets. Dr. Holland was working with a large committee, I was lucky enough to be on it, to begin to, with the help of the NCCN, try to figure out, how we [create] better studies, and how we work with oncologists, to try to figure out a lot of the questions about how to bring psychosocial care into the cancer centers and therefore into the private cancer offices as well through regional and local education and work. We reviewed the literature and tried to understand the guidelines for this. [We found that] there were no guidelines for how to do this, and through collaborative work, working with all the NCCN centers at that time and around 1998/1999, we developed the first guideline on how to review [distress screening] in the cancer clinics.

We use the word distress because there was a realization that if we use depression or anxiety or a psychiatric term, we would be missing the boat. We know that much of the distress in the first year after diagnosis was often not related to a psychiatric condition, but to pain, to worry, to anxiety, to sleep problems, to the physical problems that cancer and its treatment might be playing in the patient's life. We wanted to use a word those oncologists, patients, families, and clinicians would recognize, and then try to figure out, based on algorithms, how to get from distress to a physical condition to spiritual conditions to practical conditions like transportation, towards financial issues, towards family issues, and then to psychiatric issues. Over the last 25 years, we have worked to come up with a new and improved guideline each year using the NCCN. It’s grown over the years.

We have also developed something called the Distress Thermometer. From the very beginning, it was a 0 to 10 algorithmic scale that patients could easily look at the thermometer. It was likened to the pain thermometer at the time. We thought that would be easy for patients to then switch over to this fifth vital sign. We call it the fifth vital sign, because as patients know, when they come into the doctor’s office, they are getting their temperature, their weight, and their blood pressure. Asking about pain and then distress would be easy enough to do in the clinic setting, and recorded in the patient’s chart, and this could be put on a graph, or it would be easy to see how patients were doing over time. The Institute of Medicine (IOM) took this on, and with Dr. Holland’s help, around 2006/2007, it became known through this IOM report that psychosocial care was integral to the care of all patients with cancer, and it should be measured and evaluated. We now have a mandate at all cancer centers, and in all regular clinic appointments, to come up with a way that patients could be evaluated for distress. It’s not a requirement to use the distress thermometer or the NCCN guideline per se, but it’s a requirement here in the US that all patients should be evaluated for some aspect of distress, and it could be depression or anxiety.

McFarland: Do you have any thoughts on whether the oncologist should be aware of what the distress screen is, because I have noticed in many places that often distress screening may run parallel. It may happen within nursing or within some other capacity, and the oncologist is not even aware that it's been done. Do you have any thoughts about that? I do not know if that was how it was intended, or did it evolve that way?

Riba: Twenty-seven years ago, or so, when we started this, we did not have EPIC, and we did not have a medical record that could be shared amongst different institutions and with patient portals. We were not advanced back then, but now with the various systems, if you go to a hospital in New York and then you come to Ann Arbor, with the patient’s approval and consent, we can look at the records and we can have an integrated record for patients, and we can follow a lot of the work and the care that the patients had in one system to another, and that includes emergency departments as well. In terms of screening tools, many primary care clinics now require a screening of depression and the Columbia Suicide Severity Rating Scale, so we can also follow that and have that information and give us other data points that we can follow when we are seeing patients for oncology care. That’s [quite] helpful. Patients are used to this, and often, patients are doing these screens a day or 2 before they are coming into the oncology clinic. It’s the responsibility of all of us who see the patient that day, whether the patient’s going for an X-ray or the patient’s going for chemotherapy, to look at the patient’s record and see what the patients input into those screens are, and whether we know where we all should be using standardized scale so that we can match them and I think most of us are doing that at this point.

McFarland: Ideally, the oncologist should know where their patients’ distress is. You also [mentioned] screening for depression. Looking at the literature and everything. We care about distress, we care about anxiety, we care about a lot of things, but in terms of outcomes, it’s always depression that is associated with the worst outcomes in terms of adherence to medications and even survival. Do you think that we might be at a point where we might like in primary care, just go ahead and screen for depression as well as distress? Or are we not there yet?

Riba: We are doing it in many clinics now. For example, at our cancer center, the clinics can decide to have options about what screens they want to use for their patients, so it’s not mandated. That’s because patients are seen at various times. Whether they are in the bone marrow transplant clinic, survivorship clinic, or they are in the breast cancer clinic, they are being seen in different ways. We have left it up to the different clinics to decide. Some of them have decided to go with the PHQ-9. Some of them are doing distress, and there is now growing literature about that in high-risk groups like head and neck cancer. Even though there are studies to look at the high prevalence of depression, anxiety, and substance use in some of these populations, and whether, even in a preventative, prophylactic way, starting antidepressants early would be beneficial to patients and their care.

Anxiety is probably as or even more problematic for patients [than] depression. Anxiety often keeps people from taking their aromatase inhibitors or stay on maintenance medication for various conditions. We have to measure and ask about that as well. And then substance use. Many patients are afraid to tell us about their substance use history, especially women, and they are afraid that we will not give them the treatment or the doses or let them be on certain trials. It’s important to talk about this, to ask about it, and invite patients to tell us that we can help them with these addiction problems that are prevalent and to get off nicotine and other substances. Cannabis is being used in many different states now, and many patients are having significant [adverse] effects from it. It’s important to ask, and then we have to make sure we have the resources and treatment to help them.

McFarland: I am an oncologist, and I am seeing my patients in clinic. Aside from screening, how do you bring psychological care to patients?

Riba: Any recommendation for that oncologist who wants [that training] is probably the doctor who’s most able to think about a patient in the totality of it. Because any symptom that the patient has could be related to the primary cancer. I have always thought about the oncologist in that way. The oncologist has always been attentive to psychosocial issues. What has not followed so much is the practicality of delivering the screening tool, the evidence base for treatment. The oncologist has always been [quite] sophisticated about understanding all this, and in fact, we have some problems, because a lot of times, patients started viewing the oncologist as their primary care doctor, and it clogs up the system. A lot of oncologists are very glad to take that on and be the first one to hear that headache or a fever, because you always want to make sure it’s not the cancer or related to the treatment or the cancer.

With that said, at the recent NCCN meeting that we had last April, the oncologists were not asking us about the screening, per se. They were asking how we deliver this on a practical level. We have taken that to heart, and [we created] a subcommittee of the NCCN distress guidelines. We believe that a collaborative care model in oncology is probably the way to go. We are modifying the distress guidelines, and our whole committee has to review the recommendations for this, so it’s not in the guideline right now, but we believe that just like in primary care, we think there needs to be a collaborative cancer care model that helps to begin to address how we can provide that care in a systematized way.

McFarland: I love the idea of a collaborative care model and seeing where that goes and aligning our 2 fields a little bit more. Because fundamentally, mental health needs to be right alongside cancer care.

Riba: It’s a population-based public health method of looking at the large numbers of patients who have mental health issues, concerns, distress, and we have a large group of [patients] who have oncology distress, concerns, problems, and if you look at that, you know they overlap, but we are looking at that overlap group and how to best address those people individually. We are looking at ways to destigmatize psychiatric conditions.

To listen to the full podcast discussion, visit: https://www.cancernetwork.com/view/distress-screening-making-the-fifth-vital-sign-integral-to-oncology-care