Table 3.

Illustrative quotes: why do rheumatologists not know more about lupus and share what they do know with their patients?

These are things that doctors know … that it’s probably important for the patient to know, but they [rheumatologists] don’t necessarily think about telling the patient that. You don’t know how it’s [lupus] going to progress. They [rheumatologists] give you a spectrum … but they don’t know how it’s going to progress.… I think at least it would give you a heads up of what to expect [if more information was communicated to me]. Respondent F …And I’m like, how am I supposed to function after you take 15 vials of blood? I still to this day don’t know what it [all the blood work in a previous city] was for. They [current rheumatologist’s office] call, and they say, ‘Your lab results are fine’. They say ‘[rheumatologist] needs you to do this or that’. Nope, they don’t really tell you what they’re doing. Respondent A No, I don’t expect anybody [rheumatologists] will tell me anything.… I’m a fact-based person, you know … no one can deal with facts about anything [related to lupus]. And I understand and respect it [lack of concrete information]. At the same time … [it] is very frustrating. Respondent E This is my personal opinion, that people are so focused on their lane that they don’t see the overarching whole-body aspect of the cascade of symptoms and how it’s all interrelated. And how all the systems are working together to kind of set you up unless you manifest with these specific symptoms and we can call them lupus. But that no one really understands the overall mechanism. Respondent E