Table 1.
Concepts relating to treatment decision-making identified in the patient interviews, with patient quotes
Concept | Patient quotes |
---|---|
Reduce/stabilize tumor size | “[T]here’s a possibility that it could help shrink or keep it under control what was there showing at that time.” [101-010] “Well, number one it was, um, the ability that hopefully the more, ah, treatment or medicine I got, it would help more—it would shrink the tumor more.” [101-007] “Dr. — explained to me, you know, that, um, if I would go on maintenance it would be better as far as preventing it from growing, and each time I have had scans, every three months, and it has not grown.” [101-006] |
Efficacy in general | “Just the fact that it was—it could make it better.” [101-007] “[I]t has been already been researched to be, um, effective, um, with that progression, with that point of progression, and to me that says okay, it is—it is an okay drug.” [101-005] “One obviously would be the effectiveness, how effective it is going to be compared to what I’m doing now. If somebody came up today and said okay, I’ve got this, um, ah, drug A and we want you to go to this instead of what you’re doing now, obviously the first thing I’d want to know is how effective it is.” [101-002] |
HCP recommendation | “Well, there really wasn’t any. I mean, he just said that, uh, you know, my cancer was decreasing, so it was now time to put me on maintenance. That was pretty much all that was really said. I never questioned it, so. I mean, I trusted his judgment.” [101-009] “[T]here isn’t another course of treatment. I didn’t have choices. I didn’t—it wasn’t do you want A, B or C. It was kind of like this is what we have… This is the course of treatment for what you’ve got.” [101-001] |
HCP discussion | “[J]just shortly before I finished up my chemo treatments, um, he said that he might want me to, ah, consider it and he explained it all to me about the maintenance drug.” [101-010] “They told us what it would involve, you know, the time—time, ah, it takes and then the effort it would take for my body and, um, you know, how weekly, um, that works and biweekly and whenever I go to maintenance. The whole thing is laid out at the beginning to let you know.” [101-002] “But—but, ah, he explained that to me. He says you’re going to feel some effects of chemo just like, you know, like you did from the regular chemo, but it’s not going to be as severe and it’s not going to be as long. And what he told me is true. So I—I—I have no regrets. He didn’t—he didn’t force me to do it. He explained the pros and cons and, ah, as far—like I told you, as far as I was concerned, it was a no brainer.” [101-004] |
Adverse effects | “Mainly what were the side effects of the drug, the long-term and well, the short term and—and the long term side effects. Um, I did some research and talked with someone at [NAME] and, um, and, um, from that, ah, that was one of the things that helped—helped me make the decision to go ahead.” [101-005] “[Doctor] says you’re going to feel some effects of chemo just like, you know, like you did from the regular chemo, but it’s not going to be as severe and it’s not going to be as long.” [101-004] “As far as the side effects, they give you—they gave us a big, um, manual to read and—and tells you all the side effects that’s possible that could happen.” [101-002] |
Advance research | “[I]t helps me to feel safe doing the, ah, um, study program and being on the maintenance chemo and hoping in the meantime that it helps the research.” [101-002] |
Dosing/regimen | “[T]his was also a factor, which I wasn’t taking as much medicine which had cut back on it and plus I wasn’t taking it as often which I said it was just like every two weeks and then I had a rest period.” [101-007] “Did I have questions? Um, probably you mean I don’t have to come but every three weeks? And the doses will be smaller and take less time?” [101-006] “But the regular maintenance it was the inconvenience, the going to the—going to the clinic every week, getting blood drawn, and then after getting the chemo, I was—I was pretty sick for, you know, three or four, five days. But the maintenance chemo, I feel actually a little worn out a couple of days, but then it just day by day by day I just feel, you know, stronger and not as tired. Um, the regular chemo compared to the maintenance chemo is nothing.” [101-004] |
Discussion with family or friends | “The only one, my wife was with me all the time that this was going on and, ah, ah, we discussed it, do I or don’t I take it, and, ah, she was with me 100 percent. Let’s try it and see. We don’t have nothing to lose.” [101-010] “Well, I learned a little bit from my son even though—I mean, he had the same diagnosis. But he reacted differently and he had it in different places than I do, so.” [101-009] “[Doctor] told me I could take time to, you know, decide what I wanted to do, which I took about I guess a couple of days and, you know, through the process of discussion with my family and everything, I decided I was still—I would take the maintenance treatment.” [101-007] |
Proactive treatment | “And I feel like if I’m not doing at least the maintenance I don’t feel like I’m doing all I can do to—to battle my cancer… You’re still going to be doing something and participating in your treatment. And that’s—that’s what I want. I want to feel—I want to feel like I’m proactive. I want to feel like I’m doing everything I can to fight this.” [101-011] “And on the—on the flip side also is to know that it is working and so there is no, um, um, you know, doubt that the cancer might come back because unless you scan every six weeks and it shows that it is not coming back, it helps me to feel safe doing the, ah, um, study program and being on the maintenance chemo.” [101-002] “I mean, I hadn’t taken as much drugs and plus I hadn’t take it as often, you know, during the month, plus, ah, you know, just being, ah, wanted to be proactive. I wanted to do as much as I can, you know, to—to, ah, get the situation where, um, I feel good about myself.” [101-007] |
HCP healthcare professional