Table 1.
Domains and Selected Illustrative Clinician Comments about Lung Cancer Screening (LCS) with Low-Dose Computed Tomography (LDCT) for Patients with Histories of Head and Neck Cancer (HNC)
| Domain | Clinician Comment |
|---|---|
| Current Practices for LCS | “We discuss it with survivors that either currently still smoke, or have a relatively long history of smoking, um, or, … quit relatively recently. … we tend to, at least bring it up, and say, ‘you know, everything looks good, from a head and neck perspective, but … there’s always the possibility of lung cancers and other synchronous cancers.’” (CS) |
| “… many of them, when I see them out after two years, I say we can pretty much relax. Your main reasons now for seeing me are not to look for a recurrence, but to be concerned about uh, second primaries, morbidity from treatment and then um, just follow-up to see what’s new and what we can do to help you along the way.” (CS) | |
| “I haven’t done a lot of lung cancer screening, ‘cause I’m a little bit hesitant about the data. I’m worried about the false positives and the consequences of that.” (PCP) | |
| “I would say most specifically for lung cancer screening, I’m thinking about whether they have a smoking history because that kind of qualifies them or doesn’t qualify them.” (PCP) | |
| “In my mind, it’s probably not always terribly clear, and I don’t think it has to be, whether I’m doing it to look for a second primary or whether I’m doing it to look for a metastasis.” (CS) | |
| “I don’t know that I frame it specifically as ‘I’m also going to look to make sure you don’t have a primary lung cancer.’ But it’s ‘we’re gonna look at your lungs to make sure that there isn’t a tumor there.’” (CS) | |
| “… it’s infinitely better to have prepared patients to understand what you’re looking for and what the implications are of finding something.” (CS) | |
| “Oftentimes in our institution, patients have been transitioned to the survivorship clinic by that time. And so I’m not necessarily the person that’s making that decision or having that conversation.” (CS) | |
| “Beyond the five years, um, I’m a little more hesitant to order annual chest imaging. … I’m not entirely certain of its utility. We would always weigh if the patient remains a current smoker and if they’re younger, so that if we find something then we’d … have the ability to act on it with curative intent.” (CS) | |
| “Always the first thing that comes to mind is, is this something that this patient would--is gonna do anything about? … if we found a one centimeter nodule in their lung, what would that do? … would that create a ridiculous amount of anxiety? Would it be something that they would address? Are they healthy enough to do that? So it’s usually, like, the aftermath that I’m thinking about.” (PCP) | |
| Perspectives on LCS with LDCT for HNC Survivors | “…I know I’m kind of being a hypocrite when I say I’m not convinced by the data, … I don’t think it’s necessarily any worse than mammograms or, you know, some of the other screening tests I do…” (PCP, 10) |
| “We still end up with the problem of false positives and that leading to additional anxiety, additional work up, additional cost, additional procedures that have their own morbidity.” (CS) | |
| “I think in many patients we end up pursuing things that don’t end up being tumors, and that brings up a lot of anxiety for them, and it brings up a lot of appointments that they don’t need to have and healthcare dollars that perhaps would’ve been better spent other ways.” (CS) | |
| “… how does screening impact the head and neck cancer surviving population? Is there a survival benefit…? And that might depend on their stage of cancer, and on the type of treatment they receive for their head and neck cancer. … do those causes of mortality from long term complication of their treatment … reduce the benefit of screening for their lung cancer?” (CS) | |
| “We don’t know a whole lot really about the advantages specific to our population of patients, because the one lung trials study was done in a broader population of patients.” (CS) | |
| “… our current, you know, data that we have available and decision-making tools are mostly for the … lung cancer risk and smoking, um, history. Not necessarily taking into account the patient’s cancer history.” (CS) | |
| “I wish we had a test that was as good as the one that patients are imagining they’re getting ‘cause, you know, what patients want is … we focus it at the right people, and we minimize their, uh, false positives, and we minimize the false negatives, and it tells them if they are ok. That’s what they wanna know. … that’s, uh, unfortunately not the test we have.” (CS) | |
| Perceptions of LCS Discussions | “We know them the best.… We’ve seen ‘em over years. We kinda know where they fall on that spectrum of how much they want to do…or how little, what their fears are, what has happened to them in the past, and how that has shaped their ideas about things.” (PCP) |
| “I would probably know the patients and their recent tolerance in medical health better than, say, their primary care doctor would. They don’t know how rough it was to get through radiation, … how long it took them to recover from that. … how that has impacted their employment status and their eating and all of these kinds of things.” (CS) | |
| “It’s hard to send people back, even though we try, to their primary doctor ‘cause they have all their faith in the people that treated them here. … I’m sure the primary care doctors could do it. I’m just saying it’s patient preference.” (CS) | |
| “I usually let the cancer people do the follow-up [for HNC survivors]. Often, you have to look inside their mouth in a certain way, and there are certain tests that they do, … I let them handle that kind of follow-up, until it’s been maybe a longer time, like five or ten years post-cancer. And then everyone tends to relax a little bit after that.” (PCP) | |
| “…if I’m talking to a cancer doctor about cancer screening, …. the implication for me is that he wants me to have it done.… I think that’s baggage that we [PCPs] don’t have.” (PCP) | |
| “…if you, as their cancer-treating physician, recommend or elicit their input into what they think about getting a screening test…, I think that might be different than it might be coming from their primary care provider. … they might put more weight on it, maybe, ‘cause you were their cancer-treating physician.” (CS) | |
| “No, I don’t trust patients to really, really grasp that [false positives/overdiagnosis]. … the one level is like, ‘should I screen?’ And the next level of decision is like, ‘what do I do if it’s suspicious?’ Like, ‘yes, no,’ is ok, but what I do if it’s a like, ‘well, maybe,’ type of thing?” (PCP) | |
| “[Discussing LCS] requires a lot of work on the front end to, like, paint this picture of what ifs. ‘Ok. What if we see this? What if we see this? What if we see this?’ ‘Cause I feel like the times that I’ve ordered the low dose CT, there’s always something on it.” (PCP) | |
| “…every time they come in, about smoking, you should offer some comment.” (PCP) | |
| “I think talking about smoking cessation is worth at the time bringing it up at each visit. Talking about it is more impactful on the person’s health. Talking about, um, lung cancer screening can be a very involved discussion if you really work your way down to all decision-making points, and is not as worth the time, in my opinion.” (CS) | |
| “I most often have that conversation at the get go, … at the time that I’m meeting them for consultation for head and neck cancer. Because there’s many reasons I can advocate for smoking cessation. Whether it would be … the fact that they’ll tolerate the radiation better because they’ll have fewer irritation to the mouth and throat area and the fact that we do have proof that people that continue to smoke have worse outcomes.” (CS) | |
| “I talk to all my patients each visit about whether they smoke. And if they do smoke I ask, you know, whether they’re interested in quitting … I don’t talk to them about smoking cessation relative to lung cancer screening.” (CS) | |
| “I typically will in follow ups with my patients, if I’m seeing them once a year or every six months, we’ll talk about their smoking status. And that discussion for me, tends to be separate from my discussion about lung cancer screening.” (CS) | |
| Challenges to LCS Counseling and Shared Decision Making with Decision Aid | “Some patients have a very personal or emotional reason why they think certain screening is important … or why they will or won’t pursue it. … if this woman’s mother had breast cancer at age 45 and died, she’s gonna want a mammogram. It doesn’t matter if I tell her mammograms will cause her more harm than good. She wants one. So for some people, going over the data is not beneficial.” (PCP) |
| “If anything, they’re [survivors of HNC] more interested in being proactive and finding things before it’s gone too far.” (CS) | |
| “I can’t say that I’ve ever brought in another counselor or a, a pamphlet or decision-making tool or anything like that to help. Often our clinics are so limited by time that even like patients occupying the space of a clinic room to say take time to fill out an online tool or whatever would really slow the clinic work flow.” (CS) | |
| “[Shared decision making about lung cancer screening] was just taking up too much time in each clinical visit, ‘cause it’s too complicated to work through all that to be a shared decision. … that’s one of the things that probably points me towards in a practical sense, you know, focusing on other things in clinical visits.” (CS) | |
| “They [screening discussions] take a long time. … they almost always have questions or concerns or reservations that you have to address. … there’s a lot of unknowns, … Like, ‘how much difference is this gonna make?’ And I can’t answer that for most things that we do, so that’s extremely frustrating.” (PCP) | |
| “We have some people that don’t read. We’ve got a fair number of patients, not only that, that don’t read English. We have to have it in Spanish too.” (CS) | |
| “…we may have planned to talk about colon cancer screening, but then they come in… they’re short of breath, and they have a flare of their asthma …. Well, obviously, then their colon cancer screening gets pushed off to the next time. So it’s often what is most urgent for that day, and you try to find a visit where there’s not as many urgent things that you can sneak some of those things in. … I feel like this is where we should have these conversations. I wish we had more time to do it.” (PCP) | |
| “One thing that I struggle with … is that we have these guidelines and sort of recommendations, but I think people want the sense that you’re taking them into account as an individual, … like, that you’re using their individual situation to make recommendations.” (PCP) | |
| “[Some patients say] ‘I will take your advice. Whatever you tell me to do, that’s what we’re gonna do, if you tell me I need it,’ and their presumption is that I’m telling them to do more stuff.” (CS) | |
| “I think to get reimbursed for Medicare, you have to use a decision aid, and … there are all these rules to get reimbursed…. So sometimes I’m not sure that I’ll follow all of the rules and do it the right way. That wouldn’t necessarily stop me from doing it, but, but making it a more routine part of my practice, I think that might slow me down a little bit …” (PCP) | |
| Challenges to Implementing LCS with LDCT | “I worry more about the national implications of the guidelines. You know, someone in rural Iowa who does the low-dose CT scan, finds the nodule, and then sends it to a pulmonologist who only does a few of these in a year. Then what happens to those patients when they have complications? … I’m not as, as worried about that complication here, although it still is a risk, certainly.” (PCP) |
| “We tend to try to do things here, just because it’s easier to make sure we’re getting quality studies, and we’re getting them in sort of appropriate timeframes.” (CS) | |
| “I don’t necessarily have a system for saying, like, ok, I had that conversation with her in February about lung cancer screening, and I ordered it. Did that ever get done? Like, I wouldn’t necessarily be alerted to the fact that it didn’t get done until the next time I saw that person. Which might be years, … if they don’t come back all the time.” (PCP) |