Table 3.

Thematic quotes from patient-provider encounters

Theme	Quotes
Stymieing In-Depth Discussion	1) Provider D to Patient 10: So, the test is a simple blood test that we want to do initially…Since I am already doing your annual blood, I’ll just include it. There’s no extra prick, it’s the same one test that I am going to do for everything else, okay? 2) Provider D to Patient 6: So, we’re going to test your prostate today. 3) Provider D to Patient 8: I have to re-test your sugar because sometimes if you have sugar, it makes you pee frequently and then we’re going to check your prostate, okay? 4) Provider E to Patient 12: Regardless, like I said, black men are at higher risk so it is recommended that you start screening a little bit earlier now. Now would be the time, especially now that you are coming to the doctor, checking everything out, doing everything up. Okay?… So which one would you prefer? The blood test or the rectal? Or you can even do both honestly.
Highlighting SDM Importance	1) Provider B to Patient 2: So they left it a little bit more up to the patient, but that makes our job a little more tricky because I can’t just say to you the moment you walk in here, do you want PSA or not? Because you’ll be like I don’t know, you tell me…. Patient: Definitely. This is something that I would always like to have a conversation with my doctor regarding testing if it’s recommend[ed] Provider: Right, that’s where it’s becoming more of a gray area. It used to be at this age order this test, but now it’s if the patient would like. It’s patient preference now….But then the patients often appreciate some guidance from us in terms of figuring out what that preference is Patient: Yeah, I would rather listen to what you tell me because you studied humans so you would know more than what ourselves would know. Provider: Like I said, if you walk in the door and I say do you want this test or not. More often than not people would just say what you said initially which is “yeah, do everything, test me top to bottom, I want a complete checkup” 2) Provider B to Patient 3: …doctors do not know who should be screened for prostate cancer. So it’s a frustrating situation for you because you come to us wanting advice and we don’t know the answer…. It’s difficult for us too because we want to be able to give you advice and we don’t know. It’s based on the science and the science is not clear…. So, this whole conversation is basically to decide whether we order the PSA or not. And you don’t have to decide today…. So, it’s just a difficult decision and this is why they made it something that they’ve thrown it back at you. The patient is the one to make this decision. Our job is to answer any questions that you have, to explain as best as we can, and try to help you with that decision. 3). Provider E to Patient 11: So, in the end, the whole point is for you to be knowledgeable enough about it so you can make a decision what to do. 4) Provider E to Patient 12: …so, what we do for screening mostly is actually we have a discussion and, in the end, we make the decision together 5) Provider E to Patient 13: Typically, the recommendation is to have this discussion with you as I am and then essentially the choice is up to you whether or not you even want to pursue screening for prostate cancer. And if you do want to pursue, what do you want to do? Whether it’s the blood test or the rectal exam…. It’s up to you to decide.
Indicators of SDM Quality
Provider recommendation	1) Provider B to Patient 2: You have no symptoms, no family history, you’re relatively young for the spectrum of men that we would even be screening at all or considering screening for prostate cancer. Patient: So, you know I actually would refuse the testing then in that case because, honestly, I don’t want to jump from one place to another and worry myself knowing that I feel okay and fine and healthy…. Provider: So, chances are even if we put in the test, it will come out totally normal…. So, you want to skip it for now? 6) Provider C to Patient 4: I would want to screen you. It’s a blood test but I’m wanting to know how comfortable you are because the screening test is not 100%. 7) Provider D to Patient 7: So, black men have among the highest incidence of prostate cancer in the world so that’s why it’s very imperative that we do this test. 9) Patient 10 to Provider D: So, I need to follow up with [the urologist] so I can get my PSA? Provider: Well, I’m doing that now as part of this screening test. Patient: Okay Provider: So, we can either play it two ways which is I can refer you and you can go see him, but I’m going to do the PSA anyway… 10) Provider E to Patient 13: Necessary is a wrong term. In general, we just kind of recommend what we think is the best and so forth. … Prostate cancer is relatively slow growing type of cancer so, the chances of it causing you to die… is much lower than anything else… That being said, if the screening test that we have for cancer, usually I recommend patients to do some form of screening, I don’t force you obviously but I do recommend it whether it’s one or the other. One that’s quick and easy that we can do here or we can do it through the blood work as I described before…
Patient-specific factors
Age and/or race	1) Provider A to Patient 1: One thing they are trying to do is to encourage young, black men to screen for their prostate. Usually a lot of men don’t like to get screened. 2) Provider B to Patient 2: … it should be done in African American males, the recommendation is after 45 years of age. So, the results of the test can be completely negative but an elevated prostate screening or so requires additional testing. Just testing, not treatment…. You have no symptoms, no family history, you’re relatively young for the spectrum of men that we would even be screening at all or considering screening for prostate cancer. 3) Provider B to Patient 3: …in most cases, men should start discussing prostate cancer screening around the age of 50. So, you’re not 50, but we could say you’re around 50. Today’s your birthday, so you turned 49. But we could say you’re around 50….Now there is more prostate cancer …in black men and obviously if a man has a family history, but you don’t….There is a little bit higher of a risk in all black men, whether or you have a family history or not….Since those are risk factors, those are people who might want to start screening younger than age 50….If you were a black man with your brother or father or grandfather with prostate cancer, that would say we should do it. But you don’t have that family history. 4) Provider C to Patient 4: …That’s recommended for men between 40 and 45, up to about age 70…The recommendation is a little stronger for black men because for some reason, we’re not sure why, black men tend to have a higher risk of developing prostate cancer and also a higher risk of developing a more severe form that progresses faster. 5) Provider D to Patient 5: And it should be done in African American males, the recommendation is after 45 years of age….As an African American male, you have a higher risk of developing prostate cancer than other people, have you thought about doing a prostate screening test? 6) Provider D to Patient 6: Jamaican men have some of the highest rates of prostate cancer on earth. 7) Provider D to Patient 7: So, black men have among the highest incidence of prostate cancer in the world so that’s why it’s very imperative that we do this test. 8) Provider E to Patient 11: So, as far as prostate cancer screening goes. It’s recommended starting at age 50, all men are screened or at least have a discussion with their doctor to start screening for prostate cancer. Now just like any other cancer screening that we do, if you’re considered at higher risk, we start a little bit early. High risk for prostate would be black men, if you have a family history you’re considered high risk. Then we’d start earlier, usually 45…You’re 46 now and being African American male, you’re considered a higher risk bracket for having prostate cancer. 9) Provider E to Patient 12: People at higher risk are people who have family history of prostate cancer, especially if it’s a first-degree relative like your father or brother, but also black men are at higher risk of having prostate cancer…In addition to routine blood work, once you are 45 and older, we also talk about prostate cancer screening in men. Standard is 50 and older, we start screening for prostate cancer. Patient: 50 and older? Provider: Yes, 50 and older but people who are at higher risk we start earlier so we start at 45. 10) Provider E to Patient 13: But to kind of go over it again, we start screening for prostate cancer typically at age 50 and people who are at high risk we start a little bit earlier. You’re already over 50 so, you already fit that category…Being a black man, it puts you at a higher risk because there is more prevalence of prostate cancer in black men.
Family history	1) Provider B to Patient 2: Now to this issue, anyone in your family with any cancers, including or not including prostate cancer? 2) Provider B to Patient 3: Now, I know you said the last time that you didn’t know very much about your family’s history in terms of health problems. But no body with cancer that you’re aware of? …. Like men with cancer? Or problems with the prostate? … If you were a black man with your brother or father or grandfather with prostate cancer, that would say we should do it. But you don’t have that family history. 3) Provider D to Patient 7: Any prostate cancer in the family as far as you know? 4) Provider D to Patient 8: Does it run in your family? 5) Provider E to Patient 11: Let’s talk a little bit about prostate cancer screening. You already did this so obviously you know this is what we are going to talk about because you did the previous part already. Starting off first, anybody in your family that had prostate cancer? 6) Provider E to Patient 12: Anybody in your family with any type of cancer?
Symptoms	1) Provider B to Patient 2: I haven’t had a chance to ask you yet if you had any funny symptoms like difficulty urinating or feeling kind of like dribbling, or feeling like you have to go but then you get there and you can’t, just anything abnormal? 2) Provider D to Patient 6: And how many times you waking up at night to urinate? 3) Provider D to Patient 8: Oh okay, so is it hard to stop the/start the stream when you have to go or you just go frequently? Patient: Yeah, it depends on how much I drink Provider: oh okay. In the night, how many times do you wake up to urinate? Patient: I think on average about twice. Sometimes, I go through the night doesn’t get up, but if you work it off in average it might just be about two times Provider: When you do go to the bathroom, does it burn?…Does it itch? Nothing?
Patient knowledge	1) Provide D to Patient 10: What do you understand about the prostate screening process? 2) Provider E to Patient 11: And do you know much about prostate cancer?…That was going to be my next question, do you know where your prostate is?
Pros and cons of screening
Positive reasons for getting screened	1) Provider A to Patient 1: Exactly, it’s better to know and do something about it. And just find out later on and it’s too late… 2) Provider B to Patient 2: …this test is very easy. It’s just a blood test that I would either put in the order or not put it in. You would be having blood drawn already for other kinds of tests like to look at your liver function, just the routine stuff. 3) Provider B to Patient 3: You wouldn’t feel those symptoms until a more advanced stage…The benefit would be to know earlier. The other thing that I wanted to show is this PSA, which is the test that we use. 4) Provider E to Patient 11: As far as not screening, is there any risk or benefit to that? Obviously if you don’t screen, you’re much more comfortable. You don’t have to go through all these tests, but then you can obviously miss a cancer that’s there if you don’t do the screening. Prostate cancer in general, grows pretty slowly. It’s not something that when you’re diagnosed, that you die the next day kind of thing. It tends to be a slowly progressive type of cancer. Most men honestly who have even been diagnosed with prostate cancer, even if they do nothing will die of other things before the prostate cancer actually kills them. That doesn’t mean there aren’t any other aggressive cases that can happen also. We can’t predict that. 5) Provider E to Patient 12: The whole issue with prostate cancer is obviously it is a type of cancer. Any type of cancer we can know more about, treat, eliminate would ideally be the best thing to do. 6) Provider E to Patient 13: The blood test is a very sensitive test. It means it can pick up a lot of things, which is obviously good because the more things you can pick up, the more you look at and anybody who has cancer probably wants it to be diagnosed more likely than not.
Down sides to screening	1) Provider A to Patient 1: But one thing also when your PSA is elevated, sometimes it is not the cancer. Sometimes as you age, the prostate becomes enlarged as well. It’s part of aging. 2) Provider B to Patient 2: …Here’s the thing about PSA, it is good in some ways but it is almost too good in the sense that it can be false positive, if that makes sense. There are often times when the test will be positive but it’s not because the person has prostate cancer. There are a whole host of other things that can make the PSA come out positive or elevated. The place where it was becoming burdensome was if the number comes back high, how do we interpret that and do we want to send you off for all these other tests or not? 3) Provider B to Patient 3: Now, the issue with prostate cancer is that the science is not as clear about the benefit versus harm of screening for prostate cancer. The reason being, the test that we use if we do the screening is called PSA - prostate-specific antigen. What it says here - prostate cancer screening, which is the same as with colon cancer, is done in men who have no symptoms of the disease. It is not clear in this case whether getting screened for prostate cancer can extend a man’s life or help him avoid symptoms or problems… So, the drawback, the downside of PSA is that they can sometimes show up positive even when there’s not a cancer. So, this kind of leads you down this path of doing more and more testing. And even when it does discover cancer, it’s often a cancer that is very slow to progress.…It can be increased for other reasons besides cancer. So, that would be what we might think of as a false positive. Any of these reasons here can make the PSA go up even when someone doesn’t have cancer. 4) Provider C to Patient 4: Sometimes, we get false indications that there’s cancer when there isn’t…Sometimes, it can miss cancer that is there. 5) Provider E to Patient 11: In the end, as far as those two modalities, the discussion we’re supposed to have is that obviously no test is 100%, but with prostate cancer screening there’s a high risk of what we call false positives where you have a positive test. More common with the prostate blood test. Let’s say it comes back elevated or high, it could be for other reasons, it could be a lab error, or it could be you have a little inflammation of the prostate that is not cancer that can make your test go high. Let’s say that happens, then what would happen next is that you would have to see a specialist. They have to do a biopsy which can be painful and they would have to test. Biopsy in itself is not 100%. Let’s say you have a cancer and it’s in this part of the prostate, but the biopsy only got this area, you can miss the cancer. 6) Provider E to Patient 12: …what can happen is the test level can be high and that’ll trigger the thought that you might have cancer, but it could be high for other reasons such as inflammation of the prostate which a lot of men get as they get older. So it might be a little confusing if the number is high. If the number is high, again you would need to do a biopsy test. …Some possible issues that could occur with it is over treatment, over testing, where as if the number is high that kind of forces to have to do…You might have to do numerous biopsies over time to monitor over time, which can be painful in itself. Then sometimes you end up treating just because things aren’t sure but if the number keeps going up they kind of have to treat it and you end up getting surgery and needing other treatment for prostate cancer and so forth. 7) Provider E to Patient 13: The downside of that is that it can pick up things which we call false positives where it’ll have a high number which will make me think “hey, it can well be cancer” and then really isn’t any cancer. And then would have to go down the line of doing biopsy, doing more tests. It’s just a lot more visits so can have complications in itself with the biopsies. It can be painful, etc. It may not necessarily be warranted.
Patient preferences	1) Provider B to Patient 3: So, ask yourself, do I want to know if I have prostate cancer even if the cancer might never do me any harm? If I found out I had prostate cancer, would I want to be treated considering what we are talking about in terms of these risks? Then the thing that makes it tricky is I think it’s difficult to predict which cancer is going to move quickly and which one is going to move slowly….Would you be willing to accept a high risk of side effects coming from treatment like a surgery, for example, in exchange for a small chance of living longer? 2) Provider C to Patient 4: I would want to screen you. It’s a blood test but I’m wanting to know how comfortable you are because the screening test is not 100%….Sometimes, we get false indications that there’s cancer when there isn’t….Sometimes, it can miss cancer that is there. How comfortable would you feel if there was a cancer there, would you want to know it? Would you want to be able to do something about it/ to act on it? 3) Provider E to Patient 13: Then, it probably makes more sense to kind of trend [PSA] and follow it. Are you okay with that? 4) Provider E to Patient 11: So, the next thing would be to discuss screening for prostate cancer, whether or not you want to screen? Then, which way you want to go about it, whether it’s the rectal exam, or the PSA test, or even both? Any thoughts?
Final decision outcome
Plan was made to conduct PSA	1) Provider A to Patient 1: Sometimes now [PSA screening] is not required, but usually we have to talk to you about it to see if you want to get it done…so is that something you want me to order today? 2) Provider C to Patient 4: Okay, so you’d feel comfortable with going ahead and doing the blood test for that?…The cancer screening - okay. So we’re going to do that. 3) Provider D to Patient 5: Would you like to have the blood test today?…Okay, I’ll add that in the blood work. 4) Provide D to Patient 10: So, we can either play it two ways which is I can refer you and you can go see [the urologist], but I’m going to do the PSA anyway… 5) Provider E to Patient 11: I guess we could do the blood one first. We’ll give that a try. If it comes back positive, then maybe we can double check with a more thorough. I think to start off, a blood check should be enough.
Patient decided not to go forward with screening	1) Provider B to Patient 2: So chances are even if we put in the test, it will come out totally normal… So you want to skip it for now? Patient: Yeah
Decision deferred to later appointment	1) Provider B to Patient 3: Right, I know it’s a complicated scenario. If I had to boil it down… Patient: I’ll just think about it and read on it. If I have any questions, I will come back and ask on it.
Next steps if screening is positive	1) Provider A to Patient 1: But most of the time if it’s very high, usually if it’s higher than normal, we’ll refer you to urology for further testing. And it’s up to if you’d want to do biopsy or continue with that. But it would be highly recommended if the PSA comes back elevated so we can refer you out. 2) Provider B to Patient 3: So, if your PSA level, if we decide to test it, is high, do not panic. It’s possible that it’s high for reasons unrelated to cancer. If it’s only a little high, often the next step is to have it done again. That’s saying how we would interpret the result if we did the PSA. As of now, we haven’t even ordered the PSA. 3) Provider D to Patient 5: And it should be done in African American males, the recommendation is after 45 years of age. So the results of the test can be completely negative but an elevated prostate screening or so requires additional testing. Just testing, not treatment…[If the PSA is positive] you will be referred to a specialist and you will be explained all your treatment options. 4) Provider D to Patient 6: But whatever the result is, there is no need to rush into any decision. It doesn’t grow in one night, and you don’t need to make a decision in one day. 5) Provider D to Patient 7: The result of this could have multiple implications but whatever happens I don’t want you to rush and do anything. So, we do a test and if the PSA is elevated, then you will go to a specialist, a urologist, but it’s not like it was before. You don’t do it and automatically get a biopsy of it because a biopsy has potential side effects including impotence and incontinence so we don’t do that right away anymore….Unless you have a very strong family history or fast growing malignancy, it’s still just a wait and see. 6) Provider E to Patient 11: …Let’s say that happens, then what would happen next is that you would have to see a specialist. They have to do a biopsy which can be painful and they would have to test. Biopsy in itself is not 100%. 8) Provider E to Patient 12: Okay, so we can do your blood test with the rest of your labs. Obviously, if it does come back elevated, then we’ll also have to do a rectal exam and you’ll have to see a specialist who also does a rectal exam and does additional tests, including possibly a biopsy….If the number is high, again you would need to do a biopsy test. Okay?