Table 2 Conceptual mapping of the PROMIS GH v1.2 questionnaire to the qualitative results from patient interviews

Item 1: In general, would you say your health is

✓

[INTERVIEWER]: … has this heart inflammation caused any psychological impacts or impacted the way you feel?

[PATIENT]: I know it sounds crazy to say, but sometimes I just want to be normal. But what is normal?.… Because I think it's more of a hindrance. Like, I feel like my body's falling apart

Item 2: In general, would you say your quality of life is

✓

[INTERVIEWER]: … has anything changed since … you first visited the doctor for those symptoms [sharp chest pain and trouble breathing]?

[PATIENT]: Uh, my quality of life has.… I would do, like, walks. Um, I would walk three miles a day. And now I – sometimes I can't even get started when, um, when I have the symptoms

Item 3: In general, how would you rate your physical health?

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[INTERVIEWER]: Are there any other impacts that you experience to your life?

[PATIENT]: Um, I used to be able to ride a bike.… And that I can't do as much

Item 4: In general, how would you rate your mental health, including your mood and your ability to think?

✓

[INTERVIEWER]: … how bad would you say it is [patient described symptoms as ‘sharp stabbing in the chest’] … if you had to describe, you know, how severe or bad it is?

[PATIENT]: I mean, I'm pretty much just not the same person.… I guess I'm just a miserable person. Even my wife tells me I'm a miserable person to be around when – when I'm going through these episodes

Item 5: In general, how would you rate your satisfaction with your social activities and relationships?

✓

[INTERVIEWER]: Is there anything else that you kind of changed, or, um, stopped doing, or do less now, because of the pericarditis?

[PATIENT]: I used to go out, you know, with friends, stay out late at night. That I don't do anymore

[INTERVIEWER]: … would you say that it [recurrent pericarditis] affects your ability to engage in social or leisure in your life?

[PATIENT]: … it has stopped me from socializing with family gatherings. You know, I just – I'm too tired to even get ready and go out and do a 3-day weekend

Item 6: In general, please rate how well you carry out your usual social activities and roles. (This includes activities at home, at work and in your community, and responsibilities as a parent, child, spouse, employee, friend, etc.)

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[INTERVIEWER]: are there specific examples that you're thinking of that, when you feel tired, you can't do as well?

[PATIENT]: I just can't finish [mopping and sweeping]. Like, I'll do half the house, and then I'll just have to take – sit down

[INTERVIEWER]: is there any other impact it [recurrent pericarditis] has on your daily life?

[PATIENT]: I mean I can't be active with my grandkids

Item 7: To what extent are you able to carry out your everyday physical activities such as walking, climbing stairs, carrying groceries, or moving a chair?

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[INTERVIEWER]: How severe would you say that [tiredness feeling] is, in general?

[PATIENT]: I still kind of tried to work out, because I always tried to be as healthy as possible. And it – it was just too hard for me to do

[INTERVIEWER]: Can you describe what that [fatigue or tiredness] feels like?

[PATIENT]: Um, exhaustion.… I just I love to walk, well, that's eliminated. I don't do much walking. I'm just so tired

Item 8: How often have you been bother by emotional problems such as feeling anxious, depressed, or irritable?

✓

[INTERVIEWER]: You mentioned fatigue. Um, can you go into a little bit more detail about that, how that feels – you know, how it affects your day?

[PATIENT]: Well, when you have the acute episode, you know, you're going through all that pain, and all the other symptoms – palpitations and shortness of breath, and maybe a little low grade fever, and uh, that cough's coming off and on, the stabbing pains – all that is very taxing on your system, you know. And it's really denting. It's depressing to have all these symptoms. And you're fearful, you're extremely fearful

[INTERVIEWER]: …what did the shortness of breath feel like?

[PATIENT]: It's frightening, it's scary. You think you're going to smother. And – and you think you're going to die. It's like you're – you're underwater, and you can't get oxygen

Item 9: How would you rate your fatigue on average?

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[INTERVIEWER]: which one would you say is the most bothersome symptom and why?

[PATIENT]: Hmm, the most that bothers me – I would say palpitations. But actually, I don't get those as often as how I'm feeling fatigue. Do you know what I mean? I've gotten to the point where I'm so fatigued that I – I really can't get out of bed

Item 10: How would you rate your pain on average?

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[INTERVIEWER]: I just wanted to talk to you a bit about your … the sharp, stabbing chest pain you talked about before.… I was just hoping you could describe it a little bit more

[PATIENT]: I would say sharp pain more like, um, like if, like if a elephant's sitting on me so I'm suffocating

[INTERVIEWER]: I'd like to talk a little bit more in detail about, um, each of these things that you've mentioned … so, you said the chest pain, um, sort of feels like a stabbing?

[PATIENT]: Yes, stabbing pain.… Like needles