Table 1

Patient and provider feedback on potential value of shared information about cognition for patients with SLE

PurposeRepresentative quote
Patients (n=18)Providers (n=9)
Distinguishing cognitive problems from other issues‘You wonder okay, now, if I’m having something else going on or if it’s a lupus fog.’‘It would be really helpful to understand if it is a real problem, or if it is their mood, or just their perception.’
Explaining cognitive problems‘I think it’s helpful information because it does break down the different types of memory loss, like, 'cause I never thought about it. How it’s broke down.’‘They might feel a little bit less frustrated if they can see that they do have some cognitive impairment, and maybe that’s why they’re having some trouble at work.’
Improving patient–provider interactions‘I think it would break the ice. Sometimes when you go to the doctor, you’re scared or it just doesn't come to you, certain things, you may just wanna ask. With all of these different segments…it will bring back some of the things that you may have wanted to ask.’‘I think it would maybe help change maybe how you counsel the patient. If they’re more cognitively impaired, maybe give them much more simple instructions or involve the family a little bit more.’
Guiding decision-making‘I want them to, you know, refer me to like a neurologist or something, that can see my brain and see what’s going on and how it’s functioning and, get me some type of help there.’‘A lot of our patients are, surprisingly, professionals who are still doing things like teaching, or pharmacists, so some of their daily work is very important. If we found something like this, it might be something we would have to intervene on.’
Improving cognitive functioning or preventing cognitive impairment‘[I]t would be nice to know what I can prevent now because luckily I'm still young. If there’s something I can do now to make it better when I'm 40, 50, 60…I don’t know, brain exercises.’
Monitoring cognitive function over time‘[Y]ou want to know if you've improved or if you failed or if you slightly fell out, or whatever the case might be.’‘This would be good in certain situations especially if you have a patient that always comes in and says they have the lupus fog, to sort of track them.’