Table 4.

Overview of EORTC‐MY20 scale improvement and worsening change scores

Scale	Improvement change score across interview sample	Example quote	Worsening change score across interview sample	Example quote
Disease symptoms	20	“Well then I could tolerate the pain instead at being at 70 or 90. I can tolerate the pain and do all what I want to do.” (US‐09, change from 90‐70, 20‐point improvement)	10	“Because it's hard to—I mean it's hard to handle a normal life when it gets, when it gets to that kind of pain, you know.” (US‐17, change from 20 to 30, 10‐point worsening)
Side effects of treatment	No clear pattern (evenly distributed 10/20/30)	“It would indicate a significant decrease in the pain I’m experiencing in my hands and feet, uh, my back, uh, and at times other parts of my body.” (US‐11, change from 90 to 60, 30‐point improvement)	5‐10	“Side effects would cause me some concern, in that they had developed and that could be because my myeloma would be deteriorating.” (UK‐02, change from 10 to 20, 10‐point worsening)
Body image	20	“I was thinking of really what would be significant, um, in terms of my body image, you know, how much of a change and I feel that a 20 change would be noticeable and important.” (US‐02, change from 80 to 100, 20‐point improvement)	10 or 20	“There would be some gradual degradation over time, um, if we're talking about months, quarters, and years. Uh, and I should be mentally prepared for a physical appearance, you know, changing for the poorer.” (US‐14, change from 75 to 65, 10‐point worsening)
Future perspective	10	“Um, maybe just that much a little closer to a longer remission than a 70.” (US‐15, change from 70 to 80, 10‐point improvement)	10 or 20	“I think there would be more, more bad days than good days. Um, and, you know, not just physically hindering you but mentally, um, there's definitely times when I can't put my finger on it. And I don't want to say depressed, but there's, there's times where you do feel down, but you don't know why.. Um, including the future.” (US‐18, change from 80 to 70, 10‐point worsening)