Dr. Ehdaie discusses patient counseling for active surveillance

There are many stigmas surrounding active surveillance (AS) for patients with prostate cancer, mainly stemming from the notion that this type of care will lead to disease progression or inadequate treatment.

Behfar Ehdaie, MD

In an effort to destigmatize active surveillance, Behfar Ehdaie, MD, MPH, discusses ways in which patients can be their own advocates when choosing a treatment method as well as discussion points for clinicians to use when counseling their patients on the AS option. Ehdaie is a urologic surgeon at the Memorial Sloan Kettering Cancer Center, New York City, New York.

What are some of the stigmas associated with active surveillance from the physician perspective? From the patient perspective?

From a patient perspective, cancer is a call to action. In many cases, [for patients], the “C word” brings to mind family members, friends, [and] neighbors who have been diagnosed with cancer, whether it's prostate cancer or other cancers. These are usually associated with aggressive treatments. And so, prior to any discussion with physicians, patients perceive that this cancer needs to be eliminated and needs to be treated aggressively. I think with that, after they initially have a conversation with [their] physician post-diagnosis, the risk of disease progression to incurability is a significant fear and concern for them.

From a physician perspective, I think we now realize active surveillance for men with low-risk prostate cancer and favorable intermediate-risk prostate cancer, in many cases, is the preferred treatment option. And this has been accepted by radiation oncologists and urologists in a recent article, surveying over 1000 urologists and radiation oncologists.1 Over 70% believe that active surveillance was the preferred treatment for men with low-risk prostate cancer.

Having said that, there are concerns, I believe, with patients being lost to follow-up. They're concerned about missing a significant cancer, whether that's related to their concerns about the experience of their own pathologists, radiologists, [or] their electronic medical record system to be able to longitudinally follow patients to allow them to go back in time to see how exams have changed or PSA values have changed.

I think, historically, we have attributed active surveillance barriers to physician misalignment, so incentives being misaligned between treatment and surveillance. But [based on] my personal belief and research that I have done, I think this is less likely to be an issue and I think that's by far the minority issue in regard to active surveillance uptake. Otherwise, going back to that survey with urologists and radiation oncologists, despite 70% reporting that active surveillance is the preferred treatment option, a majority of those physicians also stated that the reason that active surveillance is not used as a primary management strategy is because patients won't accept it. So, I think that's where we see the largest barrier.

How do the stigmas surrounding active surveillance affect the management of patients with prostate cancer?

The key to active surveillance is an acceptance between the patient's family, the patient, and the physician to monitor this cancer. And the stigma around cancer is that if left untreated, it can spread and become incurable. Therefore, patients, their family members, [and their] friends may review a management strategy that's not aggressive treatment up front and see it as an opportunity lost for cure. That, obviously, would be a barrier to accepting active surveillance for patients as part of their management strategy.

What is the urologist’s role in destigmatizing active surveillance?

I think this is the critical question. My research focused around discussing active surveillance with patients to be able to boost the appropriateness of that management strategy in comparison to patients' own biases for an aggressive treatment for cancer. In our research, we partnered with Harvard Business School, and specifically the negotiations team, in which they came and reviewed our discussions with patients and determined that many of the things that we were saying and how we were saying them were actually preferentially focusing on surgery and radiation. It's in this space that I think physicians can make a major difference.

Our reported findings in our study [which were] published in European Urology in 2017 and profiled by The Wall Street Journal, focused on patient preferences being the driving force of treatment decision-making.2 So, the first part is understanding what the patient's preferences are and expanding them beyond life and death. Cancer often narrows the focus of patients and their families. And that includes what we as physicians know: quality of life, sexual function, urinary function, cost, the ability to be seen and followed, finding the cancer in time and treating, having a care team that they can trust. Bringing those factors in, combined with strategies, which include setting the default option as active surveillance when describing the options for treatment [and] providing context to that decision [are key]. For example, when we used to have these discussions with patients, we would tell them, “We'll see you back in 6 months as part of your first follow-up,” and this would be after a long discussion [about] active surveillance. We learned that the patient's immediate reaction or their family's would be, "That may be too long.” If because they’re making a decision outside the context of cancer care, we have that knowledge as opposed to patients. It's our mistake for not being able to describe that. So, we said, "Before presenting the follow-up plan, we would discuss context of prostate cancer natural history." For example, a patient would ask me, "Well, when's the next follow-up?" And I go, "Well, let's first talk about prostate cancer. We know that prostate cancer is a slow-growing tumor. With studies in men who were diagnosed with prostate cancer in which their disease was managed expectantly. We expect changes in your prostate gland to occur 7 to 10 years after diagnosis. And with PSA screening, we're discovering these tumors 4 to 7 years earlier, so it'd be safe for me to say for you to come back and see me in 5 years, similar to screening that we do for colonoscopies after polyps are discovered. However, I want to monitor you closely. So, I want to see you back in 6 months." Now, 6 months to a patient almost appears like a bargain and these factors are the context behind the discussions we have with patients.

Finally, [it is important to really allow] social proof to be part of our discussions. We now know, for example, at Memorial Sloan Kettering, 95% of men with low-risk prostate cancer choose active surveillance. This needs to be shared with patients. The larger decision group would choose active surveillance. You're no different. So, I tell patients, "Now, 95% of men just like you choose active surveillance." We [also] have to give them tools, because when patients leave the office, they have conversations with neighbors, friends, [and] family, and they need to be their own advocates. I leave them with 3 important things to remember. One: no study has ever shown that active surveillance for low-risk men provides a benefit in overall survival. Number 2: treatments for prostate cancer, including surgery and radiation, are associated with significant side effects that will impact your quality of life. And 3: active surveillance is not doing nothing. It's close monitoring. It is a treatment option. And with this, we finally set to normalize the process.

Many men feel anxiety associated with this decision. Therefore, I need to make them aware they're not alone. I actually tell them all in the beginning [that] all men experience anxiety. All families are anxious. You're no different. So, combining all these to a standardized approach to discussing active surveillance and risk management is critical. The final piece is to discuss treatment options before the biopsy. Allow active surveillance to be a choice that the patient can see, prior to their biopsy, in the horizon. When a discussion is made after a diagnosis, patients would ask me, "Is this a low-risk cancer?" after they've been told it's a cancer because they know that an option would then be to manage. It doesn't need to be surgery or radiation. Setting that stage, really focusing on those conversations, using the appropriate tools that we've grasped from behavioral psychologists that are being used by negotiation specialists, are critical in medicine. [They] can not only be applied to active surveillance for prostate cancer, but across medicine.

Is there anything else you feel our audience should know about this topic?

Number 1, I would say we're currently expanding the role of active surveillance, expanding the pool of patients that we considered eligible in the past. Number 2, we're learning better ways to keep patients on active surveillance. In essence, the triggers for treatment are being expanded and not being as conservative. We're using various forms of volume pattern for a biopsy, for example. Lastly, I would encourage your listeners to go and evaluate our study to really evaluate what we developed as a standardized approach to systematically discussing active surveillance for patients with newly diagnosed prostate cancer.

Reference

1. Kim SP, Gross CP, Nguyen PL, et al. Perceptions of active surveillance and treatment recommendations for low-risk prostate cancer: results from a national survey of radiation concologists and urologists. Med Care. 2014;52(7):579-85. doi:10.1097/MLR.0000000000000155

2.Ehdaie B, Assel M, Benfante N, et al. A systematic approach to discussing active surveillance with patients with low-risk prostate cancer. Eur Urol. 2017;71(6):866-871. doi:10.1016/j.eururo.2016.12.026