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Table 4 Overview of mobility-related content from the focus group transcriptsa

From: “When I saw walking I just kind of took it as wheeling”: interpretations of mobility-related items in generic, preference-based health state instruments in the context of spinal cord injury

Theme

HUI

EQ-5D-5L

15D

AQoL-8D

QWB-SA

SF-36v2

General remark

Wording of mobility

Wheeling… is our equivalent to walking, and it is so different mechanically FG3

You can still get around but you just can’t do it by walking FG2

I don’t think mobility is just related to walking FG1

I liked the wording of the mobility question, it doesn’t exclude anybody getting around, however you get around on your hands or knee or do cartwheels FG3

 

Can you walk today? Well, no, some people can, of course, but the majority of them can’t, they have trouble getting around. Could you walk a hundred yards well I can wheel a hundred yards today FG3

 
 

The first question is an absurd question FG1

But the other one it jumps at you right away the first thing can you walk? It’s like oh poor me, thanks for slapping me in the face with that one FG2

How do you get around it seems whatever way you use canes, crutches, wheelchair or you use your legs FG3

 

I just wonder how the answers would be interpreted … like I say the walking one hundred yards, well I can wheel hundred yards without thinking, but I’m not going to put that on here, I’m going to put no, and they look at it and oh that’s a problem FG3

 

Wording of mobility (continued)

  

I didn’t like the choice of words…, I don’t think walking is your only parameter for mobility FG1

It doesn’t say anything about walking with wheelchairs, it just says mobility FG2

 

So this section I don’t know what they are going to get from that. You’re limited to walking more than a mile, whereas it gives you the option of wheeling right, it’s getting more specific FG3

 
  

Very first question right away can you walk, okay, well thank you very much for that one. I kind of, you know, next one FG2

In brackets it says, for example going uphill, that’s where I struggle FG2

 

If it said wheeling I can do it no problem, they can gather that my health is pretty good FG3

 
  

It’s a terrible use of words FG1

    

Reference to aids and appliances

It didn’t give you the option of wheelchairs FG3

 

Doesn’t even mention the fact of being wheelchair bound FG1

This one includes the wheelchair you know FG1

Is there any reason why there wasn’t in the, ‘which health aides do you usually use why.’ there isn’t wheelchairs or any disability things there? It’s limited FG1

There should be more questions for wheelchairs, you know, spinal cord, because I tell you, you know, you can’t walk FG3

I found the questions were I think vague when they came to wheelchairs especially there’s no FG3

Reference to aids and appliances (continued)

They’re beating around the bush about equipment but they’re not mentioning you’re unable to walk but are you able to get around. It’s a mobility thing, … [It needs to be] defined a little bit more, if you’re trying to find wheelchair people FG2

 

I think there needs to be more questions applying to people,…do you need a wheelchair to get around? FG3

I liked number fifteen when it talks [about] mobility, it also included aids or equipment such as wheelchairs, frames, stations and stuff because if… I have the equipment I feel comfortable with my mobility FG1

How would you want someone like a paraplegic to answer those questions? I mean they are not applicable to people who are confined on a wheelchair FG1

There should be more questions on wheelchairs right, can you walk a mile or four weeks ago, well da I don’t know, can you wheel a couple of blocks in four weeks, oh yeah, you know, more questions about wheelchairs, it’s very open right? FG3

Well for us … if the wheelchair is in there …, I’d feel more part of it FG1

If I’m in a standing frame or a walker I can walk, but I can’t walk unassisted…, none of them really helped me answer that one FG1

 

And there’s no option on wheelchair FG1

It doesn’t say anything about walking with wheelchairs, it just says mobility. Just think about your mobility including using any aids or equipment FG2

Where does a wheelchair fit in? FG1

So this section I don’t know what they are going to get from that. You’re limited to walking more than a mile, whereas it gives you the option of wheeling right, it’s getting more specific. If it said wheeling they can gather my health is pretty good FG3

 
  

Written a little bit like wheelchairs isn't really part of the questionnaire FG2

How do you get around it seems whatever way you use canes, crutches, wheelchair or you use your legs FG3

   

Lack of suitable response options

If I’m in a standing frame or a walker I can walk, but I can’t walk unassisted…, none of them really helped me answer that one FG1

 

It is just like just close our eyes and pick one FG3

The question seems appropriate, people like this question because the options are relevant as opposed to walking FG3

How would you want someone like a paraplegic to answer those questions? I mean they are not applicable to people who are confined on a wheelchair FG1

By having questions like this that have nothing to do with me, so they’re not going to get any information, or they may even get a false sense of my health status by asking questions like that FG3

 
  

I thought that question was kind of hard to fill out. …Well it didn’t really have an option for me per se because like there again this question is put in front of somebody like they don’t know whether you’re in a wheelchair or you’re a quadriplegic, paraplegic or if you’re bedridden or you can walk with a cane, right? FG3

  

I just wonder how the answers would be interpreted … like I say the walking one hundred yards, well I can wheel hundred yards without thinking, but I’m not going to put that on here, I’m going to put no, and they look at it and oh that’s a problem FG3

 

Lack of suitable response options (continued)

  

Even with help to being bedridden, an invalid basically, like I mean you feel almost insulted that there isn’t any recognition for people that are in between FG1

  

This whole one section here I mean none of these apply basically, walking a mile etc. FG3

 
  

The first question right there I didn’t know which one to tick FG3

  

It turns me off, I mean there is no relevancy to me FG1

 
  

I don’t walk but I’m also not completely bedridden either FG3

    
  

I can’t walk at all but even if someone is trying to help me, I still can’t walk but I’m not in bed either FG1

    

Reframing of items

It didn’t jump out at me right away, so I kind of like, well I’ll just change it to wheel again FG2

 

Yeah it’s kind of walking to wheel FG2

  

When I saw walking I just kind of took it as wheeling. But the other one jumps at your right away…, I’ll just say wheeling instead, I don’t mind crossing that off and putting that FG2

 

When I take my dog for a walk, I just say I’m going to go take my dog for a wheel FG2

    

If it said wheeling I can do it no problem, they can gather that my health is pretty good FG3

 

Wheeling is our equivalent to walking FG3

      
  1. a Some quotes were assigned to more than one theme. Abbreviations FG1, FG2 and FG3 indicate the respective focus group transcript for each quote