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Table 1 Illustrative quotes

From: Describing perspectives of health care professionals on active surveillance for the management of prostate cancer

Content area Illustrative quotes from health care professionals (HCPs)
HCP perspective defining AS When I think of Active Surveillance, I think the term describes the meaning quite thoroughly. So it’s a program of following a patient closely…with the intent to intervene when cure remains a possibility.
[AS is] the approach of choice when there is little disease, low PSA/Gleason scores, no symptoms.
It’s a very grey disease. The trajectory is so long, it could be ten, fifteen years before outcome change…I would be surprised you’d see any uniformity, in the way that this is discussed. The way we do it, I think everyone is clear of the standard. How it is done? I think it’s going to be very, very variable.
HCP perspective on AS practice The problem is there’s no standard protocol.
Most of us most probably are not using the same protocol because we adjust for age, like [name] was saying. We sometimes adjust for other pathology; its core for 30 or 40% so I will be more aggressive in doing the biopsy sooner, than the guy who has less than 5%, one of one core, Gleason 6.
We really don’t have a very good biomarkers or even MRI that have proven to me effective of even efficacious in finding progression.
Even PSA, you know, multiple groups, Hopkins, UCSF, have shown it is a horrible marker for progression. So the only thing we have right now is, um, biopsy.
It’s difficult to understand with the protocol, when, um, there’s really no standardize policies that exists outside, you know. Each one publishes their own, but there’s no general agreement of what an ideal protocol is. You are left each one in our guide to our own biases and their own uncertainty and… fear of the disease, you know how close to follow the patient or not.
And even the protocol at [hospital name] is changing…Even the ones that are doing the most Active Surveillance are constantly changing.
I think it’s changing year by year as well. So what we are doing now, it’s probably going to be different to what we used to do 5 years ago
The first couple of years are the easiest part about surveillance. It’s when your practice matures and you are in 5, 10 years and they are sick of the biopsies and they are aware that the PSAs are not a good marker...
There’s a great deal of learning that we need to, to tap in here and understand about this disease. The transition from Active Surveillance to Watchful Waiting; the challenges of biopsy avoidance to biopsy morbidity…the big issues.
Influences on proposing AS to patients and having the conversation Factors
PSA of...depending on the risk of patient... low to intermediate risk. PSA of 10 or less…Gleason of 3 plus 4 or less.
I think we look at the overall life expectancy, with the age, comorbidities…
Very much depend on the patient comfort, their psyche, their education, their willingness to actually engage in that dialogue, in their care and um, a cookie cutter doesn’t fit all for sure.
You know, it’s so variable. You have to individualize, you have to get a sense of the person, the people across the desk from you. You ask them. They have to know what the options are.
Having the conversation
They will have to make it, really informed decision, and they are intelligent and they are educated. I had a guy like that and it took an hour and a half of my time.
You are there to review their history with them and their journey to date. It possibly reassures them. Changes in medical health, if they are telling me they are unwell, then I start backing off.
Discussion is very important as is letting the man make his own decision/choice
The first thing I tell them it’s not a death penalty we are giving them...with this diagnosis. This is a disease that progresses over years and years. Treating it now, you might get cured, but you also get morbidities. And it is tradeoff between treating it now and treating it later.
It’s rare on the, um, first discussion to be actually conclusive. And I would give them some materials to go home and read and they come back and finalize.
Patients understand…that we would change according to the follow up. Because if we wouldn’t change our attitude during the follow up, then why would we follow up?
And I also tell them that sometimes we, we decide to operate or give radiotherapy not because it is very scientific, because it’s not, but because patients change their minds.
Patients vary in capacity and desire for information
Sometimes, these end up to be very complicated and convoluted conversations. Sometimes, they are very easy, it’s very straight forward, you just tell them, nope, no need to do anything, you know, come back in 6 months. Where they go, OK! Fine. See you. So it’s really, very, very much individualized.
Most of the patients want to understand many of the things, but some just don’t. Some just don’t have capacity and that’s fine too. It’s part of the understanding who you are talking to and you know, how much information do they actually want? Because information overload is very bad as well. So you have to give it in a, presentable manner, with presentable quality that they will respond positively and to understand. So it all depends.
Challenges in conversations
I find it a most difficult conversation, is for the patient, is a marginal candidate for Active Surveillance…so where do you go with that one?
I mean in these patients, obviously somewhere in between and they are not great candidates for Active Surveillance, on the other hand, they are not…where does this belong, right?
Often times I find myself explaining things in order for the patient to understand in a very simple manner, but how the disease behaves and we monitor is not simple at all. So I think that’s a big limitation.
I think what is important from my perspective is that I agree with [doctor’s name] when I talk to the patient. Because when he hears there are two doctors that agree, that I tell him that I agree with …whoever sends me the patient…We might disagree on a small, little details, or this and that. But basically I actually agree, we are saying the same thing. And when they hear that, they relax.
GP role
I would like us to kind of expand a little bit and educate family doctors because they are a great support.
But mainly …we [GP] know…what prostate cancer is…after the shock of receiving the diagnoses, of course, I understand that they don’t…hear you anymore. So, we can always maybe give the special [talk] My patient would be very, very comfortable to see me on that front.
The family physician may be consulted by the man in the process of making a final decision: this latter discussion may be very personally focused as the family physician likely knows the individual best; hence it is important that the family physician is aware of active surveillance rationale and is able to explain clearly, and with comfort, why it is a viable option
Role of other team members
We pretty much have the conversation at the same time as the urologist, because most of our urologists send them to us [radiologist] upfront.
I always offer my patients to see the radiotherapist, or to see another urologists if they want a second opinion.
We have a nurse that can take him on the side, talk to him about his diagnoses and make him understand there are many prostate cancer and not only one type…she has more time tell him the pros and cons are and teach them every single way to treat.
Practice here at the Prostate Cancer Centre is that the man has the opportunity to talk with all practitioners
A specialist in sexuality (nurse specialist) to talk to patients and their partners
Ideas for improving the conversation
We don’t have that nurse set up, which I think it’s valuable. Essentially what the patient needs, it’s time.
Really to be a good communicator, have good rapport with patients, to actually learn how the communication functions, what are the critical components of communication… is an incredibly valuable skill.
Here’s a group right in our center, and it the very first question they ask. For me, if I was a prostate cancer patient, I would like to know what other people in my community are doing right now. So I think every center should have a group for support…everything that they could discuss with this patient. I think this will be important... It can help promote Active Surveillance.
Like the idea of identifying a reliable biomarker; would make it easier to talk with the individual man (relevant information for him) about his risk for progressive disease
We wouldn’t be in this quandary until we have…be it genetic signature, or some sort of new protein biomarkers…
I think if you…change the philosophy of the medical community to have Active Surveillance as the default option, you know, that could improve…and you should justify why you should treat. Right now it’s the opposite. That would…change a lot how people embrace it and how often they get raised, you know and that kind of stuff.
HCP perspectives about what men think/want Because their immediate reflex is, at least at my practice is, I have cancer why aren’t you removing it?
So most young patients…all want some sort of treatment. And the patients that go on Active Surveillance are patients that are older, and both the patient and the physician are both very comfortable that the cancer will not catch up with him, through the longevity they have.
So there are times when active surveillance would have been appropriate but the individual man wants treatment; we need to support their decision
Some men come with their minds already made up; they have a level of anxiety or concern based on any number of factors (worry about side effects - particularly impotence and incontinence); worry about the cancer bringing about their death, a friend or other family member had prostate cancer as well
The risk and benefit. I think that’s how the patients make their decisions. So, weight their comfort level with the 5% risk, versus the benefit of avoiding complications.
I find that…the following 6 months, patients accept more of the idea of being treated than before the resistant…They change their mind.
The anxiety could be too high, knowing that they live with cancer.
They like the idea of not necessary being operated or treated with radiation. But the idea with a biopsy, and then another and another’s not an idea that the patients like.
Most patients are asymptomatic, they are just going on with their lives, they are very happy. And, er, they don’t feel anything. So, unless you have a strong argument that they should be treated, they are very happy not to be treated. ‘Cause you are offering a treatment that is morbid, potentially morbid, versus, er, just being, staying as they are with a few appointments and maybe an unpleasant biopsy down the road.