Table 4 Sample participant quotes about the utility of the SYMPACT-CP

Ease of completion prior to visit with doctor or HCP

001–005/WHO FC II: “I think it would be easy.…I may not have thought about the fact that I had two episodes where I was lightheaded and needed to sit and give my body time to recover unless it was—that may prompt me to remember, I needed to mention that this is something that’s happening, and it hasn’t been happening and now it is.”

001–006/WHO FC III: “It would be easy…in the sense that I could answer the question. I'll have to think about it, but I think it could be important, so yes, it would be easy. I would be willing to do it.”

Usefulness of completing prior to visit with doctor or HCP

001–012/WHO FC III: “It'd be easy, and it would probably be pretty helpful because…he just sees me every six months and once a year runs a test, so when I see him and there isn't a brand-new symptom, then we don't really talk about symptoms.”

001–002/WHO FC II: “I think it would be useful because sometimes the doctor comes in and I feel like I just forget what I was going to ask him, whether it’s rapid heartbeat or I had swelling on Tuesday, sometimes I forget because I’m bombarded with different questions. So I feel like this would be kind of like a checklist, and if it’s something I forgot to bring up, we can actually discuss it and whatnot.”

001–011/WHO FC II: “It would be helpful for me to make sure I don’t leave off anything or forget anything that I intended to talk to the doctor about. I think it’s easier for the doctors because you’ve got your questions already prepared that you want answered. Saves time. And if you actually went in with these questions in your hand, it gives you a place to write down answers.”

Expectations for scores

001–004/WHO FC II: “Well, I would expect the doctor to keep record of these questionnaires from appointment to appointment and see any trends and make any recommendations according to how it’s filled out. And maybe even make recommendations that day if they can see areas where you’re really struggling.”

001–009/WHO FC II: “I would expect him to assess if I need to start any new medications, and I would expect them to compare that with my last visit to see my progress. It would be another tool.”

001–006/WHO FC III: “I would expect him to evaluate the change, the trend, because that’s to me important. It’s the way things move. Then make a decision on changing medication, increasing medication, therapies or whatever else to be given to effect the change.”

Usefulness of reviewing scores with doctor

001–001/WHO FC II: “I think it would be useful. I think it would be good to talk about the different symptoms and the symptoms that I am encountering on a weekly or daily basis.”

001–008/WHO FC III: “This would be a wonderful asset to any pulmonary or cardio doctor anywhere.…they should send this to every pulmonary and cardio doctor.”

001–006/WHO FC III: “Very [useful]. Yes, I think it would help us to communicate with each other, to give each other an idea of where we actually stand and what position we are in.”