Table 4 NFBSI-16 cognitive debriefing summary Table (N = 15)
Item, instruction, or response option | Number of patients (n,%)a | Exemplary quotes demonstrating patient understanding of instruction or item concept |
|---|---|---|
Instructions: Below is a list of statements that other people with your illness have said are important. Please circle or mark one number per line to indicate your response as it applies to the past 7 days. | ||
Item was understood by patient | 14/14 (100%) | “To read the question and circle number zero through four depending on which pertains to the activity you’ve had in the last week.” |
Concept was experienced by patient | – | |
Item 1: I have a lack of energy | ||
Item was understood by patient | 13/13 (100.0%) | “… I am very active, but my energy level is not where it was before I started going through this whole process dealing with, um, cancer. So that’s why I pick a little bit because even during the regular day I don’t feel that I’m at 100%. I’m feeling a little low on the energy.” |
Concept was experienced by patient | 15/15 (100.0%) | |
Item 2: I have pain | ||
Item was understood by patient | 14/14 (100.0%) | “And that was because I was telling you, um, under my left arm from the lymph nodes I always have pain there. It’s not really bad. It’s probably like a three. And I have pain in my injection spots. And that lasts throughout the whole month almost. So I still have pain or soreness in those areas. So that’s why I picked a little bit.” |
Concept was experienced by patient | 12/15 (80.0%) | |
Item 3: I feel ill | ||
Item was understood by patient | 14/15 (93.3%) | “Just not feeling well. You know, um, just feeling sick.” |
Concept was experienced by patient | 12/14 (85.7%) | |
Item 4: I have been short of breath | ||
Item was understood by patient | 15/15 (100.0%) | “I lose my breath quite a bit when I go up and down the stairs.… Or I walk outside. … Phew, it takes your breath away.” |
Concept was experienced by patient | 12/14 (85.7%) | |
Item 5: Because of my physical condition, I have trouble meeting the needs of my family | ||
Item was understood by patient | 15/15 (100.0%) | “Uh, it’s just my husband and I so, um, uh, it’s difficult because I can’t do what I used to do. You know, you have to depend on people. Um, but I try to do what I can.… Yeah. ‘Cause I push myself.… So I’m going to say somewhat.… getting stuff ready. Even though he cooks, you know, I will try to fix the salad or get things ready. Get our plates ready and sometimes that’s difficult.” |
Concept was experienced by patient | 13/14 (92.9%) | |
Item 6: I feel fatigued | ||
Item was understood by patient | 14/14 (100.0%) | “Q: And what does fatigue mean to you? A: Drained, tired, achy, lethargic.” |
Concept was experienced by patient | 14/14 (100.0%) | |
Item 7: I have bone pain | ||
Item was understood by patient | 12/12 (100.0%) | “I would say if you had bone pain, that means the cancer has gotten into your bones and your bones are actually aching and cancer hasn’t gotten into my bones …” |
Concept was experienced by patient | 8/14 (57.1%) | |
Item 8: I am sleeping well | ||
Item was understood by patient | 15/15 (100.0%) | “And I answered that like that because, um, sometimes when I go to sleep I wake up in the middle of the night and I can’t go back to sleep. And then sometimes, um, even when I’m feeling tired like I’m sleepy, sometimes I can’t even go to sleep. So I might just stay up and try to watch TV until my body just decides to doze off. So that’s what I mean, but I, I’m really not sleeping well. Even when I’m – when I am asleep it’s like I can literally feel myself tossing and turning. It’s not like a just relaxed sleep.” |
Concept was experienced by patient | 12/14 (85.7%) | |
Item 9: I worry that my condition will get worse | ||
Item was understood by patient | 14/14 (100.0%) | “Because I’ve had it and it hasn’t gotten any worse. So it could get worse, but it’s not something to worry about right now. Q: Okay. Um, and when – let’s see, when it says worry my condition will get worse, what does that mean to you? A: That I constantly think about it, which I don’t.” |
Concept was experienced by patient | 12/14 (85.7%) | |
Item 10: I have nausea | ||
Item was understood by patient | 11/12 (91.7%) | “That I want to throw up. That you feel like throwing up…” |
Concept was experienced by patient | 9/14 (64.3%) | |
Item 11: I have mouth sores | ||
Item was understood by patient | 14/14 (100.0%) | “Um, like canker sores or something that maybe the treatment has caused a, a soreness or an open wound in your mouth.” |
Concept was experienced by patient | 6/14 (42.9%) | |
Item 12: I am bothered by side effects | ||
Item was understood by patient | 14/14 (100.0%) | “I am bothered, uh, somewhat, I wish they would go away.… Side effects, um, side effects of the treatments. Examples, uh, stiffness, vomiting, uh, hair loss, those are side effects of the treatment that I have taken.” |
Concept was experienced by patient | 10/15 (66.7%) | |
Item 13: I am bothered by hair loss | ||
Item was understood by patient | 14/14 (100.0%) | “I am bothered by hair loss. Not really. Not at all because I was told that it would happen. Q: Okay. Um, and what does, what does hair loss mean to you? A: That my hair would fall out.” |
Concept was experienced by patient | 9/14 (64.3%) | |
Item 14: I am able to work (include work at home) | ||
Item was understood by patient | 15/15 (100.0%) | “Um, going to your job that – your employment, um, or working at home would be just general chores, um, housework, cooking, things of that nature.” |
Concept was experienced by patient | 15/15 (100.0%) | |
Item 15: I am able to enjoy life | ||
Item was understood by patient | 15/15 (100.0%) | “I’m beyond everything right now as far as I don’t let the aches and pains bother me. I mean I’ll grumble about them, but I’ll get past them. So for me that’s a four. Q: And what does enjoy life mean to you? A: Getting out and doing what you want to do or not letting someone tell you, you can’t do it because you had cancer or trying to – in their eyes being helpful, but in your eyes kind of not allowing you to do something just let you try it.” |
Concept was experienced by patient | 11/12 (91.7%) | |
Item 16: I am content with the quality of my life right now | ||
Item was understood by patient | 15/15 (100.0%) | “Quality of life, being able to get around without anybody, with aid, that’s a quality of life, to live the life you lived before chemo. … I’m content with and always say it is more important to have a quality of life instead of a quantity of it. So if, ah, all went bad and I, and cancer would take over, ah, I would have that to, ah, evaluate it and say what about quantity, living and not being able to do, have, to do the things I want to do.” |
Concept was experienced by patient | 11/12 (91.7%) | |
Response options | ||
Response option “Not at all” understood by patient | 12/13 (92.3%) | – |
Response option “A little bit” understood by patient | 10/14 (71.4%) | – |
Response option “Somewhat” understood by patient | 11/11 (100.0%) | – |
Response option “A lot” understood by patient | 11/13 (84.6%) | – |
Response option “Very much” understood by patient | 9/11 (81.8%) | – |
Overall | ||
Patient reported NFBSI-16 is easy to complete | 12/13 (92.3%) | – |
Patient reported that there are no missing concepts | 11/14 (78.6%) | |