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Table 4 Concepts identified as missing or recommended for addition

From: A qualitative examination of the content validity of the EQ-5D-5L in patients with type 2 diabetes

Concepts Participants reporting concept as missing
n (%)
Examples of quotes from participants
Activities 11 (44.0 %)  
 Exercise 7 (28.0 %) • How much exercise you’re getting to get the sugar levels down…have you got your diabetes 2 under control with insulin, food, and exercise?
 Leisure activities 1 (4.0 %) • I know you have something about usual activities, but you know some people do other things like leisure activities, maybe the older folks might go to bingo. The younger folks might want to play football, and stuff like that. I know I see usual activities here, you should be a bit more specific in terms of sports.
 Work 5 (20.0 %) • How did it impact on your job, your relationship with your employer… you hear stories of people who get diagnosed and the employer suddenly finds a reason why they are no longer needed.
• Does it affect your employment? Because if you take tablets then I know there’s certain jobs you can’t do.
Comorbidities/Health problems 10 (40.0 %)  
 Amputations 1 (4.0 %) • I’ve known [people] that have had some sort of medical amputations as a result of the diabetes.
 Circulation/swelling 2 (8.0 %) • A late friend of mine had multiple amputations because of the diabetes…And I think it’s probably because of the circulatory issues in relation to diabetes.
 Cognitive impact 1 (4.0 %) • I would put something there, how diabetes influences the mind and the workings of the mind…I used to have a good mind…but I know that I am more forgetful.
 Headache 2 (8.0 %) • Whether they have, um, severe migraines or headaches.
 Heart problems 1 (4.0 %) • Whether they have heart problems with their diabetes.
 Tingling/pins 1 (4.0 %) • Sensory feelings…when you feel a bit tingly in the hands.
 Tiredness/energy 2 (8.0 %) • It’s all to do with energy. Are you energetic? Are you very tired all the time?
 Vision 7 (28.0 %) • Vision is a paramount thing….And it’s not mentioned on here at all.
Diabetes symptoms/Blood glucose 3 (12.0 %)  
 Frequent urination 1 (4.0 %) • If you’re out and about you have to think of going and spending a penny all the time.
 Hypoglycemia 2 (8.0 %) • How do you feel when you have hypo…you can’t literally control nothing. If you have a bad one you lie on the floor. You could wet yourself, mess yourself.
 Thirst 2 (8.0 %) • My mouth gets really, really dry and my tongue…And you can’t do nothing.
Diabetes treatment and monitoring 7 (28.0 %)  
 Medication use 4 (16.0 %) • How easy do you find it to take your medication. Some people are fearful of injecting their medications and they just won’t take it. It could have had something about do you find your medications easy to take because some people don’t like swallowing pills.
 Treatment satisfaction 2 (8.0 %) • Are you happy with the treatment?
 Side effects of T2D medication 1 (4.0 %) • I worry about the side effects of the continuing [pharmaceutical treatment] on the body mass.
 Blood glucose monitoring 1 (4.0 %) • There’s an inconvenience in doing what you’re doing… When I’m trying to multi-task and do things and I’m thinking maybe I need to do that blood test.
Emotional 8 (32.0 %)  
 Emotions (other than anxiety/depression) 7 (28.0 %) • How being a diabetic has influenced your moods and your irritation? Are you more moody? Are you more irritable? Are you more on edge? Have you noticed any change in your reaction? Are you more impatient?
• Your blood sugars can impact your moods. I’ve found that for me, that’s one of the signs that I need to think about my blood sugars and check that things are okay. And it doesn’t really bring that out in here as much, except for anxiety and depression. But sometimes moods don’t go as far as anxiety and depression.
 Worry 3 (12.0 %) • Diabetes can cause stress, stress and worry. And that has an impact on day to day life.
Food awareness/Food restrictions 13 (52.0 %)  
 Dietary restriction 12 (48.0 %) • Do you miss any food. Do you miss out on any food?…I mean you are restricted…it limits your choices…That doesn’t come under mobility or self-care, activities, walk.
• I would have liked to see something on has your diet changed.
• The impact of having to adjust your diet can be quite a large thing for many people.
• I think you really should include diet.
 Food awareness 5 (20.0 %) • I started work at 5:00 this morning so I consciously eat something before I leave. Then I'm in meetings till 11:00, so I take something in my pocket to get me through the meetings…It comes back to the fact that it's constant vigilance.
Infection 5 (20.0 %)  
 Infections 3 (12.0 %) • If you cut yourself you're at an infection risk. And there should be something there in that.
 Taking care of feet 2 (8.0 %) • I feel I need to be very careful about my feet.
Relationships and social life 8 (32.0 %)  
 Impacts on family 2 (8.0 %) • I suppose you could ask how it affects your direct family or friends. Sometimes people can worry more about it because they don’t know what’s involved in it.
 Relationships 3 (12.0 %) • How it affects their relationships with their employers and relatives, acquaintances, whatever.
 Sex life/sexual function 3 (12.0 %) • It’s going to sound silly, sex life…Some people can get an erection and I can’t because of the diabetes.
 Social 3 (12.0 %) • If I do get problems with my blood sugar, it can cause me to be less sociable… and grumpy, which of course will impact on relationships with others.
• The wider circle of people around you don’t understand it. And that can create pressures…and it leads to sort of antisocial behavior.
Weight 4 (16.0 %) • You know because I don’t see nothing here about weight.
Other responses 6 (24.0 %)  
 Financial 4 (16.0 %) • It puts the cost up of insurance.
 Healthcare 3 (12.0 %) • How do you think your medical support has been since you’ve been diagnosed?… You could ask what support you’ve had from your practitioner.
 Hereditary 2 (8.0 %) • Possibly something around family history, because …it helps explain the sort of different reactions to it.
 Positive impacts 2 (8.0 %) • You could ask a general question, “Is there anything positive that’s come out of your diagnosis?” So if someone said they were grossly overweight and they’ve lost weight that’s positive isn’t it. If they’ve altered their diet to a healthier diet. If they’re doing more exercise. I mean they may have even taken up a different job or something because of the changes in their life, which is positive.