Table 1 Selection of feedback on the FACIT-Fatigue from patients with CLL

Clarity of instructions and items

“I think they’re clear and I think that they’re valid.” (Patient with 1 L CLL)

“Straightforward, and easy, and clear.” (Patient with 1 L CLL)

“I think these questions are all pretty well designed.” (Patient with R/R CLL)

Suitability of response options

“There are enough options. It is better than saying yes or no.”

“I think [the distinctions between 0 and 4] are pretty clear.”

Relevance to patients with CLL

Overall

“I think it’s pretty thorough. It states everything from activities to the energy to the eating, a lot of things that I know I’ve struggled with.” (Patient with 1 L CLL)

“I think these questions are spot on [in making people understand my fatigue].” (Patient with 1 L CLL)

Item 10 (“I am too tired to eat”)

“I can’t imagine anybody being too tired to lift a fork, but I feel if you’re too tired to eat, it’s probably because you’re physically exhausted, and there is some effort involved in making or getting food for yourself that you just don’t want to put the effort in.” (Patient with R/R CLL)

“That’s very clear and probably very pertinent for somebody who’s really that tired. I’m sure it happens.” (Patient with R/R CLL)

Item 3 (“I feel listless/washed out”)

“This one was a little unclear. Washed out is not a term that I use or I’m familiar with. When I think of listless, I think of need something to do. Almost bored or fidgety.” (Patient with 1 L CLL)