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Table 6 Representative quotations for the most frequently endorsed impact concepts

From: Symptoms, impacts, and suitability of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT™) questionnaire in patients with sarcoidosis-associated pulmonary hypertension (SAPH): a qualitative interview study

Impact concept Quotation [participant ID]
Difficulty walking uphill/up stairs “Walking up and down the steps – I can’t make it up a flight of steps without having to stop to breathe.” [1–4]
“I can climb up steps, but what I do – because like I’ll go one step at a time, and then I might have to sit down halfway there. […]. And even with my groceries, you know, I’ll go bag by bag…It might take me about half an hour to get up my steps, but I’ll get up my steps, I go step by step…” [1–1]
Daily activities “Well, anything that’s considered exertion. Like if I’m going to do some vacuuming or mopping, and I don’t do these things super, super often, but if I’m going to do those things, […]. Because the reality is I do notice that if I’m vacuuming the floor, just that continuous movement and force that I’m having to exert, does make me breathe harder.” [1–2]
“I can’t run to the store…I can’t walk too far and when I’m walking, I get to my destination out of breath. So, if I go to the store, I have to get a cart and lean on the cart until I can compose myself. […]” [1–10]
Ability to walk (general) “Oh, we can walk slowly with oxygen…And not very long. We have figured out if we go shopping, we go to one store and look for one thing and then leave. [laughs] It’s not like when we used to be able to go shopping all day and have a good time.” [1–4]
“Well, if I walk less than a block, that’s fatigue for me. Lack of energy. It’s difficult for me to get around. […].” [1–9]
“Really if I’m walking, like even if I’m in the living room and I have to walk to the bathroom or go to the bathroom, […], like it’s cutting off down my windpipe by my lungs.” [2–4]
Carrying things “Oh yes. Yes, I do. I have to either leave [grocery bags] in the car or pray someone is at home or call to make sure, especially if it’s something that needs to be refrigerated right away.” [1–9]
Hobbies or social activities “[…]. I don’t play any sports anymore, and I was a big sports player. I watch it now. No sports at all.” [1–9]
“…I like to camp and although we can still – I still go camping at times. I’m restricted and to the hiking part of it or you know, all of the things that I want to see. I have to send the kids down with cameras [laughter]. Take pictures of that for me.” [1–8]