Table 3 In-depth interview participant quotes on tradeoff considerations between efficacy and side effects

Situations in which participants would stop a recommended treatment

Intolerable side effects

Ooh. That’s a tough question. I don’t know. I really have faith in what he recommends. Obviously, I’m not a doctor. So, if he thinks that this is going to be the best thing to get my numbers into a good place, then I want to follow what he’s going to say. But obviously, if I was deathly ill because of the medication or completely nauseated or something all the time, I’m sure I would want to put a halt to that and try to find – because with multiple myeloma, there’s – if A doesn’t work, we try B. If B doesn’t work, we try C. And if I’m uncomfortable with C, let’s move on to D. —White male, age 60, diagnosed in 2016

Adverse impact on functioning

Probably only if it would really make things non-functional. …If I didn’t get up. If I couldn’t be about my daily life. …I mean, now sometimes I’ll still have to make adjustments, but I’m still moving forward and going on with it. Sometimes I have to sit down more and that type of thing. But I’m still going. —White female, age 50, diagnosed in 2016

Treatment causes harm

Or if I found that the risk of the side effects was greater than the benefit in terms of my heart or lungs, or something like that. —White female, age 64, diagnosed in 2014

Treatment efficacy

That’s a tough one. Because I don’t want to stop any treatment unless there’s a better treatment. Yeah. I can’t honestly answer that one. Unless there’s a better treatment, I’m not gonna stop it and do nothing. —Black female, age 55, diagnosed in 2015

Willingness to trade an effective treatment for a treatment with fewer side effects

Preference for most efficacious treatment

No. I want the best treatment that’s available because I wouldn’t want to take the risk. It feels like to me that I don't know enough medically, but I wouldn’t want to take the risk of the cancer surfacing for an easier treatment because that may be fatal. And unless somebody could assure me that it’s not fatal, but why would I want the discomfort, right? So, I just don’t know why I would do that. …It’s like okay, I’ll take short-term over long-term. Yeah, I don't want to do that. —Black male, age 67, diagnosed in 2014

Treatment efficacy

I guess just you don't want the disease to be progressing, because it can cause so many more problems, so you have to balance that. If it was working less, but still slow, if it was still kind of keeping me at bay, then I would definitely consider it, but if my PET scans were getting worse, then I would probably just go back and deal with the side effects, because like I said, once you have this stuff happen with your bones and your organs, it’s hard to go backwards. You don't want to have a fracture or have kidney problems and go on dialysis. You don't want the future problems, and that could happen if the medicine wasn’t working completely. So I guess it depends on the medicine; how much is it working? Is it working a little bit, or is it working pretty good? —White female, age 52, diagnosed in 2005

Severity of side effects

I think for me, it would depend on how bad are the side effects with the treatment that’s working. Are they so bad that I just can’t tolerate it anymore, in which case I’d surely guess I would stop. If they were bad but I was still getting decent efficacy out of the drug, I think I would hang on. —White male, age 62, diagnosed in 2014

Duration of side effects

It depends on the duration of the treatment. …So, if I was going to be on a treatment that for three months, I would be miserable, but it was supposed to be more effective than possibly another med, I could live three months miserable, if it was going to be effective vs. this is how it’s going to be for the next year. I would have to evaluate the timeline of what it was going to be like. …Yeah, three to four months, probably. I could be – and then, I would have to reevaluate it. Can I do this another three months? …So, I think four months is kind of my – three to four months is kind of my okay, let’s see where we are and regroup. —White female, age 62, diagnosed in 2016