Table 2 Concepts spontaneously reported by participants in the CE interviews and participant example quotes
Concept | Number of participants reporting concept, n (%) | Participant example quotes | |||
|---|---|---|---|---|---|
Overall N = 29 | Round 1 n = 9 | Round 2 n = 10 | Round 3 n = 10 | ||
Experiences of cough with RCC | |||||
Cough characteristics | 29 (100) | 9 (100) | 10 (100) | 10 (100) | “It first starts like a tickle, like you have something in your throat, and then you just start choking.” |
Duration of cough | 19 (66) | 9 (100) | 10 (100) | 0 (0) | “[The cough] started, well, it would be over a year ago now, went on for weeks…It went on and on…I was just coughing the whole time.” |
Variability of cough frequency | 19 (66) | 9 (100) | 10 (100) | 0 (0) | “Sometimes it’s frequent and sometimes it’s not. Sometimes you may have a couple of bouts in a day and then nothing.” |
Cough symptoms and symptoms related to cough | |||||
Ability to control cough | 28 (97) | 9 (100) | 9 (90) | 10 (100) | “If I start to cough, then it doesn’t stop…when it’s in full mode I have no control over that at all.” |
Frequency of cough | 27 (93) | 9 (100) | 10 (100) | 8 (80) | “As the day goes on it gets more frequent, I cough more often.” |
Coughing fits | 26 (90) | 9 (100) | 10 (100) | 7 (70) | “Once I have a coughing spell, they get closer together…but I feel like it gets out of control in a way where I feel like it’s getting worse by the second.” |
Severity of cough | 26 (90) | 9 (100) | 10 (100) | 7 (70) | “Well, when it’s been very bad, it’s been bad to the point of choking or vomiting.” |
Urge to cough | 23 (79) | 8 (89) | 6 (60) | 9 (90) | “It’s almost like a dryness in my throat…And then that’s when I cough and then it’s a constant.” |
Breathlessness due to cough | 16 (55) | 3 (33) | 5 (50) | 8 (80) | “Not being able to breathe…I feel like my chest is tightening or itching on the inside.” |
Pain due to cough | 8 (28) | 6 (67) | 2 (20) | 0 (0) | “Can be quite severe if I’ve had a proper coughing fit…My throat can be really, really sore.” |
Leaking urine due to cough | 5 (17) | 0 (0) | 5 (50) | 0 (0) | “Because it’s [the coughing has] been going on for so long…my bladder muscles have been affected, resulting in incontinence.” |
Physical discomfort due to cough | 4 (14) | 3 (33) | 1 (10) | 0 (0) | “It’s pretty uncomfortable, it’s very draining.” |
Impacts and disruptions due to cough | |||||
Disruptions to social interaction | 18 (62) | 9 (100) | 9 (90) | 0 (0) | “I really don’t want to be around people because…I guess you couldn’t really socialize or anything like that because I didn’t want to be coughing non-stop in front of people.” |
Disruptions to daily activity | 17 (59) | 2 (22) | 6 (60) | 9 (90) | “It’s scary and it also ruins my days. If I’m planning on going someplace like going to the supermarket and if I know that that’s happening, that’s cancelled, so I’ll have to wait until another day and maybe my husband will take me.” |
Emotional impactsa | 13 (45) | 8 (89) | 5 (50) | 0 (0) | “[I] feel really depressed and sad over it because I want to be able to do everything that other people are doing.” |
Disruptions to strenuous physical activities | 12 (41) | 6 (67) | 6 (60) | 0 (0) | “I actually limit my physical activity…because the more active I am, it’ll just aggravate things.” |
Disturbance of sleep | 25 (86) | 9 (100) | 9 (90) | 7 (70) | “I’ll have to change my sleeping position, instead of me laying down, I’ll have to prop up to try to sit up.” |
Waking up from sleep | 22 (76) | 6 (67) | 9 (90) | 7 (70) | “Sometimes I’ll only get 2 hours’ sleep; I’m up all night or I fall asleep and then I wake up in the middle of the night coughing.” |
Difficulty falling asleep | 13 (45) | 7 (78) | 6 (60) | 0 (0) | “You might just be kind of like relaxing and drifting off, and then suddenly you end up having a coughing fit. And it can kind of startle you, wake you up again, as well as the person lying next to you.” |