Table 1.

Head and Neck Cancer (HNC) Survivors’ Knowledge of and Preferences for Lung Cancer Screening (LCS) with Low-Dose Computed Tomography (LDCT)

1. Knowledge of screening and LCS
Awareness of LCS with LDCT	“I have my chest x-ray once a year because of the radiation. That’s all they pushed too hard. But, no, I haven’t heard anything.” (P2, male, age 44) “[T]hey recommended it here. …So they set it up, and I had a CAT scan.” (P5, male, age 72)
Understandings and misperceptions about the purpose of LCS with LDCT purpose (i.e., to screen asymptomatic patients for a second primary lung cancer)	“I mean, if I had a cough or something, the other doctor would say, we want to take your, your lungs X-rayed” (P3, male, age 72) “…if they had symptoms, like coughing up blood or something like that” (P14, female, age 68) “[W]ithin the five-year period is kind of that concern about cancer recurring. Anything outside of that five, the way it’s been explained to me is that, if you get cancer again, it’s probably a new type of current cancer, not a recurrence.” (P12, male, age 63)
2. Receptivity to LCS and Decision-Making Considerations for HNC Survivors
Receptivity to LCS	“I think it’s a wise thing to do, you know?” (P1, male, age 68) “We got to nip it in the bud as soon as we possibly can. The only way is through screening, whether it’s mammograms or having your lungs checked or whatever it might be. It needs to be part of a yearly thing.” (P3, male, age 72) “Sounds pretty simple to me…I’d be more than glad to do one of them scans.” (P11, male, age 56) “I just feel that if they screen--if they do more screenings they’re gonna find things faster. And even if it doesn’t come up with cancer, they might find other things too, you know, so that’s how they find stuff is test.” (P18, female, age 59) “But if they recommend it, yeah, then I’ll do it, but let’s don’t go lookin’ for trouble. Unless there’s some reason you really think that I should do this, then certainly I’ll do it. I won’t, you know, I won’t jump up and down. …As general goes, I do whatever they want me to do, or recommend, I should say.” (P6, male, age 65)
Influence from cancer experiences	“I think anybody with a cancer history should do all they can do to detect any more cancer in the body because, you know, I’ve had in the throat, I can have it in my lungs.” (P9, male, age 71) “My mom and her brother both died of lung cancer, small cell lung cancer…[O]f course you’d do some screening…if you’re high risk, which I would classify myself as a high risk, uh, case. Wouldn’t you? With my family history, and my personal history, and that same--yeah, you’re probably in that higher risk.” (P12, male, age 63) “If…they would’ve tested the lung earlier, he [her relative] might still have been, you know, there, so I think they should do that.” (P18, female, age 59)
Perceived potential benefits of screening	“I’d hate to find out that I had it. I wouldn’t wanna go through that again, but I guess I’d wanna know, you know, even though if it did--would scare the heck outta you, you’d still, you know, it’s just preventive, you know? …You’d want a fighting chance about it, I guess you’d say.” (P1, male, age 68) “End result. End result is what we’re after. I don’t care what avenue we get there by. If it doesn’t hurt me and it gets us answers, we’re goin’… Bein’ on the topside of the dirt lookin’ down, instead of the downside lookin’ up … ‘Cause that day’s comin’ for all of us. No need to hurryin’ it.” (P2, male, age 44) “…you’re not gonna cure it by not knowin’ you have it… it might be cancer, it might be a cold. Well, let’s find out what it is, you know. Can’t treat it ‘til you know what you’re treating.” (P7, male, age 66) “…if there’s a way that they can screen it beforehand, you know, it would be preventable.” (P14, female, age 68) “It’s either you want to find out if there’s something the matter with you or not. I mean, you know you could question, ‘Well, I don’t know if I want to.’ Well, why not? Get it done. Find out. Then you know. You don’t get it done, you ain’t ever gonna know.” (P4, male, age 56) “I’d rather err on the side of safe…and cautious…than to say, ‘Nah, I’ll just let it go and see what happens.’ ‘Cause maybe something might be there that’s not anything, but it could turn into something. So, at least you know it’s there. If they find it and they know it’s there, it’s something that the doctor can keep an eye on.” (P13, female, age 58)
Perceived potential harms of screening	“Let’s don’t go lookin’ for trouble ‘cause they can probably find plenty on me if they really go to lookin’. …I think that I’ve been through enough of this that I think we’ll just leave it alone. That’s my feeling.” (P6, male, age 65) “Well, treating something that doesn’t need to be treated? It’s always a concern to me. ‘Cause like I say, we’re all human, …[t]here’s a lot of gray areas, and you’re trusting people to make judgments that don’t necessarily always make the right decision.” (P16, male, age 63) “[S]ay you got over a cold two weeks ago. It’s gonna show up on there that you had an infection. Or it might show up as cancer, but it might only have been an infection.” (P19, female, age 58) “[I]t depends upon the cost…if I got to have a screening, and it’s gonna cost me $5,000.00, I’m not gonna have it. I can’t afford it.” (P3, male, age 72)
3. Screening Decision-Making Process Preferences
Preference for LCS discussion with provider	“I’d rather talk face-to-face with the doctor. I don’t like all the paperwork and videos and stuff. Just have him tell me what it is and, and how he can take care of it.” (P1, male, age 68) “Personally I like to hear it first hand from the person instead of watching or reading. I mean, yes the reading is nice and the watching the videos, some of that is ok. But the best to me is still talking.” (P8, male, age 67)
Preferred providers for LCS discussion	“I’d ask Dr. A… if Dr. A said to me, ‘You know, you might want to consider this.’…Somebody that’s got a lot of experience doing these kinds of things now. I know Dr. A well enough now that if he didn’t feel comfortable talking about it, he would tell me and he would point me in the right direction.” (P15, male, age 65) “I would say the person that’s dealing with the problem. I mean if it’s your prostate, your urologist, …If it’s my general surgeon for my hernia I deal with him. I don’t go to my heart doctor to deal with my hernia.” (P5, male, age 72) “I wanna hear it right directly from the doctor because he is the guy that ultimately is the one that’s gotta treat you each and every day.” (P10, male, age 55) “[I]f they know what they’re…talking about. I’m willing to listen to anybody that knows something” (P8, male, age 67) “[I]t wouldn’t have to be a doctor. It could be a liaison person that sits down with you, that understands all this stuff. …I don’t know how you’d have that many people or just someone with that much knowledge, but I guess that’s the challenge, but even a person like that could sit down…in a setting like this would be extremely beneficial.” (P12, male, age 63)
Use of decision aids	“But as long as the conversation’s there, he shows you the tools, shows you the diagram, shows you procedures, and tells you what’s gonna happen. That’s the main thing. What’s gonna happen. What your recovery time is or whatever. And, you know, I’m comfortable with it. But I think conversation is the most important thing.” (P5, male, age 72) “Anything that your, your physician can steer you to or…anything that he either gives you or recommends for you to read or recommends for you to look up. As long as it’s got his blessing, yeah, go with it.” (P7, male, age 66) “Well, I think that there should be pamphlets out there. I’m a firm believer word-of-mouth is the best way to get things out to people…. I think some people wanna just maybe look at that…a doctor could present it to them, maybe, and say something to them, and then say, ‘Ok, here’s a pamphlet. Here’s, here’s a website where you can go and you can do some more research on this of your own.’” (P13, female, age 58) “Personal contact first. Then perhaps audio video, because we’re in an audio video society” (P17, male, age 56)
Trust and authority	“When you are in a position where people saved your life and you darn sure know that their knowledge saved your life, it changes that. So, for me, I would have to hear it from one of them. I wouldn’t want even my little local doctor to tell me that. I would want these people because they’ve truly had my life in the palm of their hand. And they were wonderful enough to take care of that.” (P2, male, age 44) “When you bring your car to me and I got it all tore apart, do you come in there and ask me, ‘Is it gonna run?’ Do you? You just expect me to know what I’m doin’. Right? Why wouldn’t I expect that from my doctor? Why would I not? That’s his profession. That’s his field. Right? That’s actually puttin’ trust in him because you know that you got the best…All the information.” (P10, male, age 55) “I would trust ‘em not to [treat something that’s benign]. ‘[C]ause I know up here that they have that…tumor board or whatever they call it. And, there’s some pretty good heads on that I think that knows what they’re talking about. I would trust them, what they say.” (P9, male, age 71) “[W]e’re supposed to be in charge of our health, but we don’t have the knowledge all the times to be in charge of our health. We have to have somebody who knows it. It’s kind of like a parent and a kid. You know? The kid’s supposed to be in charge of his life, not all the time. A parent knows better most of the time, most parents. …I would think the doctor would say, ‘Yes, we found this, but we, we think the likelihood is so low,’ or ‘We found this and we really should do this,’ and then you become a layman, and you listen to your parent, and you go, ‘Ok.’ Doctors carry a lot of weight, which they should, and they should never take that power lightly.” (P12, male, age 63)