Table 4 Patient quotes from cognitive debriefing interviews

Format and ease

Describe how well you were able to answer the questions overall.

For the most part easy, they weren’t difficult. Trying to determine which shade of something…sometimes you have to think those through. Male, age 64

Instructions

Were the instructions easy to understand? Why or why not?

Those were really clear. Female, age 56

Item relevance

Which questions were most relevant for describing how you feel and what you are able to do?

I think the daily activity is most relevant. Probably second [most relevant] would be the social. Because I don’t socialize anymore, it is an important area for me. Obviously, [my social life] has been declining as a result of AL amyloidosis. Male, age 64

How do these questions relate to your experience with AL?

Overall they are zeroing in on how I physically am and they are also trying to make sure that my mental health can handle it I guess. It’s apparent. I think those are good issues because, like I said, everybody is different. Female, age 56

Ability to detect change over time

Do you think that your answers on this would change as you felt sicker or more well on different medications?

Well, the reality of it is, when the disease is more active or when your symptoms are more active, I think that your answers would tend to be different than when you’re in, and I won’t say I’m in remission, because you don’t have a remission with the disease. But when you’re not being challenged as much by the symptoms of the disease, you would answer it different. Female, age 59

Response options

How easy or hard was it for you to answer the questions using the answer choices that are listed?

I would say very easy, and I would say very easy for any person. You know the difference between severe and none. Male, age 73

Recall period, 4 weeks

How easy or hard was it for you to think about the past 4 weeks when you were choosing your answers?

… for the past 4 weeks, I can pretty much remember what that’s about. It’s a workable unit. I can think back and say, ‘Oh yeah, in 4 weeks I haven’t…’ Male, age 67

Recall period, 12 months

And so the one question that asked about the past year, how difficult was that, to think back for one year?

That’s easy. That’s a good question. I think, over a year, it’s easy. And it’s significant. That’s why they have us doing an annual review over a year, it’s significant. So I have no problem with that. Male, age 67

Item content analysis

So now we’re going to go back to any questions that you thought were not clear…Did you mark any that you felt that they weren’t completely clear?

‘I expect my health to get worse.’ I hope not, but I don’t know. Now, guess what? Friday I might know, but right now I don’t know. So they’re kind of a guess, to be honest with you. Male, age 73

So, now we are going to go back to any questions or sections that you thought were not clear, so any place where you might have put a question mark. So, which one was the first that you marked?

'In general, would you say your health is excellent, very good, fair, or poor?' So, it’s subjective. I guess I don’t know if it’s asking me how I feel, like how I feel about my health as opposed to how my health actually is. I guess I could be wrong. So, I could be saying my health is good when it’s actually not. Female, age 39