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Table 4 Components of the questions: illustrative quotations for domains of outcome expectations

From: Cognitive interviews guide design of a new CAM patient expectations questionnaire

Outcome domain

Quotes

4.1 Back Pain

4.1.1

Back Pain

I would say [back pain]’s more specific to the pain itself, like where it hurts, how it hurts, how often it hurts, the characteristics of the pain. SEA-316

4.1.2

Back Condition

I think back condition could be things that may not be physically felt by the person. Even you know, spinal cord related problems. AZ-219

[Back condition] is pretty broad because it can entail the whole back. From the cervical area all the way down to the sciatic area. AZ-312

4.1.3

Back Pain Problems

Definitely pain, discomfort. Let’s see, I know that some sort of alignment of the spine affects it too. Pretty sure that’s more medically related. Yeah, I would probably just say pain. AZ-219

Problems, an inability to move, do things, bend over, pick things up, hold grandbabies, pick them up, get up and down off the floor. Things like that. AZ-312

4.1.4

Back pain: average/current/worst

I would say probably more like average pain. But also thinking about those times when I’m particularly uncomfortable…Average was where I went immediately, sort of a global average pain level. AZ-511

4.2 Back Dysfunction and Global Effects

4.2.1

Limitations due to back pain

Limitations due to back pain makes me think more so of like specific physical activity, general activity limitations, whereas impact is more broad than something like medical, social, physical, like a broader spectrum of effects. SEA-316

What I’m able to do. What limitations do you think of? Not sitting for a long time. In my case, not being able to do certain poses in yoga. And in my case it’s mainly sitting. I’m not supposed to sit for a long time. AZ-312

Limitations to me means not being able to do specific tasks, whether it’s cleaning the house, bending over, doing yard work, lifting the recyclables. You know, opening a bottle… just being able to do day to day things like you used to do. AZ-313

4.2.2

How back pain interferes with life

Kind of like limitations due to back pain. How pain interferes with your life, how the pain affects your life… how back pain interferes is like more active, so it makes me think more of activities. SEA-316

4.2.3

Impact of back pain on life

The impact, yeah. I think it’s broader, to me, than going right into the specific limitations… More emotional and general life kind of things, than specifically… limitations still to me, deals with something physical. Where impact is I think broader. That opens the door to other things. AZ-313

Activity level, everything, mood, like all levels of my mental state, ‘cause when you’re in pain, it’s like, to be crabby all the time or to be in pain, it’s, yeah, and then you can’t focus at work, or you know. It affects everything. SEA-515

4.3 Impact of Back Pain on Specific Areas of Life

4.3.1

Comments about how general question about impact of back pain on life was interpreted

Well I don’t think I was [thinking about emotional impact] until you asked me about it. Until you break it down into all those little pieces. It’s important to specify all those questions. Because I think it makes you think about it differently, a little bit. AZ-416

4.3.2

Impact on work

To me, it’s a different question because although I may have back pain at work I will exert more through the back pain and work through it, you know what I mean?… If you’re having a lot of pain at home, you can opt, “Okay, this day, I won’t go gardening out on the rockery” But I might tomorrow, when I feel better. Something like that. But at work, if you have to do the thing today, you’re gonna do it. SEA-501

4.3.3

Impact on social and recreational activities

Well, to me [social and recreational activities] sounds like, more about the outside, you know, gardening. Other things that I get enjoyment of out. But when you say life, I think of all aspects of my life. Or in my case, my work. AZ-416

4.3.4

Impact on daily activities

But also the overall quality of life, or however the first one is worded really averages things out, and daily activities I’m thinking about the times that I’m active during the day. Not so much nighttime activities like sleeping. AZ-508

4.3.5

Impact on relationships with family and friends

Yeah, because I was thinking impact on my life I was thinking more generally about what I’m able to do. When I started to think about impact on my family I was thinking if I was in less pain, if I had anything better then my family would be much happier. Because I’m also crabbier than I would be if I wasn’t in pain. AZ-427

4.4 Sleep, Mood & Energy

4.4.1

Back-related sleep problems

I think I chose slightly higher than what I expected to get from the back. So if my back was a 2 then I chose slightly higher because I feel like any improvement in the pain might make even more improvement in the sleep. AZ-427

4.4.2

Mood

Not having back pain would allow me to not be focusing on that pain, and not getting agitated as easily… I think the treatment itself would also provide a space for me to relax mentally and physically. Just taking the time to take care of myself, instead of just trudging through the day with the pain. AZ-508

4.4.3

Energy

Yes, anytime we do anything for my back I want… back pain is an energy suck, and anything you’re doing, I think people are gonna be hopeful that back pain will end up having less energy drain. SEA-531

4.5 Coping

4.5.1

Coping

Coping to me just means how well I’m dealing with the pain. Can I operate even though there is pain? AZ-530

4.5.2

Coping VS Self-care

When you say “self-care” I think, okay, I need to do things, remembering to stretch and doing meditation or maybe taking ibuprofen at the end of the day or something, that to me, is self-care. Coping is just kind of psychologically like, “Can I get through the day? Can I do this activity that I need to do?” SEA-MP-601