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Table 4 Illustrative participant commentary on the face validity of the six PBMs

From: A qualitative exploration of the content and face validity of preference-based measures within the context of dementia

Measure Item/section/overall measure Illustrative participant commentary
Ambiguous items
AQoL-8D Item 3: ‘How easy or difficult is it for you to get around by yourself outside your place of residence (e.g.. to go shopping, visiting)?’ “How easy or difficult, are we saying what we actually use to get around, I need an aide or…?” (Carer1)
AQoL-8D Item 7: ‘How much confidence do you have in yourself?’ “Confident to speak, confident to – I don’t know, what is it, confidence to do what?” (Carer1)
ICECAP-O Item 2: ‘Thinking about the future’ “Well what kind of concern do you mean?” (FG3, PWD)
ICECAP-O Item 3: ‘Doing things that make you feel valued’ “I sometimes think what do you mean by feel valued? What’s the value?” (FG3, PWD)
ICECAP-O Item 5: ‘Independence’ “When you say being independent is that what you physically do, think or how you act or what?” (FG3, PWD)
QoL-AD Item 12: ‘Money’ “In question 12, is that really asking me if I’ve got a lot of money or if I’m poor?” (PWD1)
Double –barrelled questions
ASCOT Item 5: ‘Thinking about how much contact you have with people you like, which of the following statements best describes your social situation?’ “Well say number five, just because it’s a double barrel request in that you’ve got to think about the way you think about people… So you’re required to have two concepts in your mind at once and interrelate them. And I think a number of those questions required you to do that.” (Carer, FG2)
AQoL-8D Item 10: ‘How satisfying are your close relationships (family and friends)?’ “…some of the questions may need to be separated. Like, ‘How satisfying are your close relationships with family and friends?’ That could be two totally separate things.” (Carer, FG2)
EQ-5D-5L Item 5: ‘Anxiety/Depression’ “Well, to me, anxiety and depression are two quite different things. I mean, they’re just sort of lumped together, isn’t it?” (Carer, FG4)
EQ-5D-5L Item 4: ‘Pain/Discomfort’ “Good questionnaire, except the anxiety and depression. I think that should be separate. And maybe the pain and discomfort.” (Carer, FG4)
ICECAP-O Item 1: Love and Friendship “Well, I think possibly if it were two separate questions, I would’ve ticked four for: “I can have all of the love that I want.” Whereas I would tick three: “I can have a lot of the friendship that I want”.” (Carer, FG4)
Difficult/abstract questions
ASCOT Item 8: ‘Which of these statements best describes how having help to do things makes you think and feel about yourself?’ “So I’ve never thought of this, having help or - sorry, having help making me feel better about myself.” (PWD4)
“I think someone with her level of dementia might find it difficult and would probably appreciate having the question expanded a bit more.” (Carer4)
ASCOT Overall “I found the questions difficult in some cases to understand and also I didn’t think that I would be able to describe them very easily to my husband.” (Carer, FG2)
AQoL-8D Item 9: ‘Does your health affect your relationship with your family?’ “Oh my role in the family, my role in the family is something that you have to think about – what that meant.” (PWD5)
AQoL-8D Item 8: ‘Do you normally feel calm and tranquil or agitated?’ “Well, I don’t know what you’re asking. Tranquil, I don’t know what it is.” (PWD1)
AQoL-8D Item 17: ‘How enthusiastic do you feel?’ “Once again the word enthusiastic, what is enthusiastic?” (PWD1)
DEMQOL Section 1: ‘Questions about your feelings’ “Well, what’s the difference between feeling lively and full of energy? That’s almost the same, isn’t it?” (FG4, C)
DEMQOL Section 2: ‘Questions about your memory’
Section3: ‘Questions about your everyday life’
“The second and third lot just wouldn’t be answerable by my wife.” (Carer, FG1)
DEMQOL Section 2: ‘Questions about your memory’ “Like, where my wife’s at – there’s no point asking anything about the memory. She can’t even repeat – she says a sentence to me, and I try and ask her to repeat it, and she can’t do that.” (Carer, FG1)
QoL-AD Item 9: ‘Self as a whole’ “Self as a whole - What does that mean?” (PWD5)
Judgemental/ confronting questions
ASCOT Item 7: ‘Which of the following statements best describes how clean and comfortable your home is?’ “No, not offended, but you get defensive in your answers, and you’d be saying ‘I don’t want to give this impression’…– ‘of course my house is clean.” (Carer4)
DEMQOL Item 21: ‘How you get on with people close to you?’ “…reword that because the minute you say, “How do you get on?” I think that’s a little bit loaded” (Carer, FG1)
DEMQOL Item 24: ‘Making yourself understood?’ “I would reword that, too, and say: Do you feel others are understanding you well?” (Carer, FG1)
DEMQOL Section 2: ‘Questions about your memory’ “My mother would definitely be on the defence, and she would give me a very generic answer to any of these questions…She would have been quickly into denial.” (Carer, FG1)
EQ-5D-5 L Item 1: ‘Mobility’
Item 2: ‘Personal care’
“About the personal care – my mother would lie about it, for sure. The mobility, it’s another one.” (Carer, FG1).
ICECAP-O Overall Maybe this is a male-female thing, I don’t know, but I think my uncle would find this document [ICECAP-O] more confronting than the last one. (Carer, FG1)
Relevance and comprehensiveness
ASCOT Item 7: ‘Which of the following statements best describes how clean and comfortable your home is?’ “…it’s self-explanatory because most people would feel better if their house is clean, sort of thing” (PWD4).
“And I wonder, this is almost a sexist way but I don’t mean it that way, where, traditionally, women who have kept house would feel more about that than other people might.” (PWD4)
ASCOT Item 3: ‘Thinking about the food and drink you get, which of the following statements best describes your situation?’ “Well, I don’t think it’s terribly important. I mean I get very well fed here.” (PWD5)
AQoL-8D Item 16: ‘Do you ever feel like hurting yourself?’ “I really can’t comment on that because I’ve never [thought of that].” (PWD1)
AQoL-8D Item 6: ‘How often do you experience serious pain?’
Item 22: ‘How much pain or discomfort do you experience?’
“Didn’t we cover pain before? 6 and 22, I think, want to become one question.” (PWD1)
“Is that a repeat – I can’t remember where it was, but it seems that that’s slightly repetitive to another one.” (PWD3)
AQoL-8D Overall I think something about being bored [is missing]. (Carer, FG2)
Family, friends. Is there anything here about partners? (Carer1)
DEMQOL Overall “While I feel that these are important – feeling, memory and life – so, you’re definitely attacking the right avenue, but the whole thing is very generic.” (Carer, FG1)
DEMQOL Section 2: ‘Questions about your memory’ “At the early stages of dementia, I think those would be relevant.” (Carer, FG1)
“I don’t actually think these should be asked because he would feel offended.” (Carer, FG1)
DEMQOL Section3: ‘Questions about your everyday life’ You could add a last question to the third part. Just some sort of general question about, “How organised do you feel you are?” or, “How easy is it to be organised in your life?” (Carer, FG1)
EQ-5D-5 L Overall “It’s a softy. It’s not very inquiring, I guess.” (PWD4)
“This is more for carers than the actual person with dementia” (Carer, FG1).
“This is a more objective.” (Carer, FG1)
“This asks relevant questions. Because, if they’re aware they’re losing these capacities, then they’re in trouble. And I think asking these questions is really quite important.” (Carer, FG1)
ICECAP-O Overall “This is about subjective values.” (Carer, FG1)
“They don’t touch much on emotions…“Do you feel sad?” “Do you feel upset,” “Do you feel depressed.” (PWD3)
ICECAP-O Item 2: ‘Thinking about the future’ “Most of the time, they don’t have a future. They don’t want to think about it. Many times, I have certain questions for Mum, and she says, “I don’t care,” because they know they don’t have much of a future coming.” (Carer, FG1)
QOL-AD Overall “I think this one [AQoL-8D] is better because it does reflect on your mood, and everything else, and shows a bit more of the person, whereas you can hide behind this [QOL-AD]” (PWD5).
“This [QOL-AD] would be a great snapshot that maybe could be asked regularly and then averaged out kind of thing. It’s just a touching point.” (Carer, FG2)
Response options
ASCOT Item 8 and item 9: ‘Having help sometimes undermines the way I think and feel about myself” “She’d probably say ‘what do you mean by undermines?” (Carer4)
ASCOT Overall “Oh so the question is in the answer? Yes. And so I think for my mother that would make it easier for her to fill out.” (Carer, FG2)
ASCOT Overall “‘As much as you want’, ‘Adequate’ – more or less the same thing like, in my mind.” (Carer4)
AQoL-8D Overall “I thought the statements, ‘I have as much control,’ or ‘I have no control,’ [ASCOT responses] would be easier for my Mum to comprehend than ‘often’, ‘never’ or ‘most/sometimes’ [AQoL-8D responses].” (Carer, FG2)
AQoL-8D Item 15: ‘I am very mobile’ and ‘I have no difficulty with mobility’ “Answer one and two are really the same thing aren’t they?” (PWD1)
AQoL-8D Item 19:‘These things are very easy for me to do’ and ‘I have no real difficulty in doing these things’ “Answer one and two are the same to me.” (PWD1)
EQ-5D-5 L Overall “I would never put a ‘severe.’ They’re going to say, “I’m not severe”. I would always talk […] much softer. Give them an out.” (Carer, FG1)
ICECAP-O Item 1: ‘Love and Friendship’ “Once again the first option and the second option are, they’re the same. ‘I can have all of the love and friendship’, or ‘I can have a lot of the love and friendship’?” (PWD1).
ICECAP-O Item 1: ‘Love and Friendship’
Item 4: ‘Enjoyment and pleasure’
“I can have, does that mean I do have right now, or I have the ability to, or the capacity to?” (PWD3)
QOL-AD Overall “…because it makes it very open…it doesn’t push you in one way or another to frame - how you frame your answers” (PWD4).
Layout and format (including instructions and recall time)
AQoL-8D Overall “…it would take a long time to do this questionnaire.” (Carer, FG2)
ASCOT Overall “I struggled with this one. I think it’s too many words.” (Carer, FG2)
ASCOT Item 4 - instruction: ‘By ‘feeling safe’ we mean how safe you feel both inside and outside the home. This includes fear of abuse, falling or other physical harm.’ “I don’t think abuse would have even come onto the horizon” (Carer4)
“Yeah, well, I jumped [the instructions], really, and [only considered safety] inside the house” (PWD4).
DEMQOL Overall – recall time (last week) “…in [her partner’s] case, he would be both cheerful and enjoying life as well as distressed and sad and lonely – all within a fairly short time frame?” (Carer 2)
DEMQOL Overall “It’s a bit more - because it’s so compact, it’s a bit more difficult. But in terms of the content, the content was fine, it’s just making sure that you kept everything in line.” (PWD2)
EQ-5D-5 L Overall “…it is the best format for someone with dementia.” (Carer, FG4)
Proxy response
ASCOT Overall “I found the questions difficult in some cases to understand and also I didn’t think that I would be able to describe them very easily to my husband.” (Carer, FG2)
“I could relate to how [her] Mum would answer them more easily...because they’re more general” (Carer, FG2).
AQoL-8D Overall “I would be able to manage this, no problem at all.” (Carer, FG1)
“Frustrated, confident, full of energy - well, that’s a very subjective thing, isn’t it? Lonely, distressed…” (Carer, FG4)
DEMQOL Overall “I mean, you can also tell about the frustration or distress. But a lot of those things are very much subjective, and it’s difficult to honestly answer.” (Carer, FG4)
‘Questions about your memory’: “See, that’s easier to answer, as a carer answering on behalf of the person you’re caring for because you’re a witness to these things.” (Carer, FG4)
EQ-5D-5 L Overall “It could not be answered by the person with dementia, but it could be observed by the carer…. if she’s feeling any pain, because it looks uncomfortable.” (Carer, FG1)
ICECAP-O Overall “…if you look at thinking about the future... I’m only answering on the basis of what I think she’s thinking; not because she’s ever said to me, ‘I’m concerned about the future” (Carer, FG4).
  1. FG Focus group, PWD Person with dementia