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Table 2 KCCQ-12 feedback

From: Do patient-reported outcome measures measure up? A qualitative study to examine perceptions and experiences with heart failure proms among diverse, low-income patients

Suggested change/explanation

N patients (N changes)

Examples of suggested changes

Question phrasing/Challenges with relevance or interpretation of specific questions

5 (9)

“Yes. I will reword it like how many times a day do you have to really make yourself comfortable by doing certain things to make yourself comfortable with pillows, standing, sitting, stuff like that.”—ptid129

“If you had to spend the rest of your life with a heart failure, what way is right? No, why would I want, I’ll read that over. If you had to spend the rest of your life with your heart failure, the way it is right now, they’re saying how would you go about it, how are you feeling right now? How would you feel about spending the rest of your life right there? I will go, ‘anything is better than dead.’ [Laughter] If you’re dead you ain’t feeling nothing, so I would go this mostly dissatisfied, mostly satisfied, completely dissatisfied, not at all satisfied. I don’t like this.”—ptid129

“The word “practical” is very important. What practical effects do showering, walking or hurrying, jogging have on your day-to-day?”—ptid400

“I would, first of all, change the words to—from “enjoy your life” to “quality of life.”—ptid400

Response phrasing/Patients desired alternative response options

5 (5)

“How many times did you feel too out of breath to do what you want? I’m just going with less than once a week, but actually, if it was less than 2 weeks, I would change it to less than 2 weeks, but I can’t use the word “never,” because “never” would imply that I’m not having that issue, you know, when it then becomes an issue, yeah.”—ptid88

Response to Question 4

“It’s not really moderately. It could be a lot of different things. ‘Slightly.’”—ptid129

Response to Question 1

“I would say three or more times per day.”—ptid190

Response to Question 5

Appearance changes/Patients desired aesthetic changes to formatting to improve the readability and engagement with the questionnaire

3 (3)

“Keep it Sans—Sans Serif and increase the font.”—ptid400

Put it on some colorful paper. Change the paper.”—ptid129

“Maybe it could be a bigger lettering but other than that, it’s good.”—ptid345