Table 2.
CE interviews: physiological symptom summary in the acute subgroup (n = 8)
| Symptom | Sample, n (%) | Frequency, n | Duration, n | Severity, range, (scale 0–10a) | Level of bother, range (scale 0–10b) | Impacts reported | Patient description |
|---|---|---|---|---|---|---|---|
| Oedema |
8 (100) Spontaneous report: 6 Current symptomc: 5 |
Daily: 2 Weekly: 2 Monthly: 1 |
Day: 1 Days–week: 1 Until medication taken: 1 Until patient urinates: 1 |
Hospital admission: 5–10 Discharge: 0–4 Now: 0–10 |
2.5–8 | Walking, diet, self-care activities | “…it was like I was dragging cinder blocks on my legs”. |
| Dyspnoea |
7 (88) Spontaneous report: 5 Current symptomc: 3 |
Daily: 3 Activity dependent: 1 |
1–15 min |
Hospital admission: 6–10 Discharge: 0–7 Now: 0–6 |
3–8 | Walking/climbing stairs, sleep, ADL, recreation, fitness, emotional, social | “…that is the worst feeling ever, the shortness of breath, because you’ve got to gasp, you’ve got to look for air…it’s almost like you’re out of shape. Once you do it and it passes, you feel real good, you feel like you just ran a marathon or something…until the next time”. |
| Fatigue |
6 (75) Spontaneous report: 4 Current symptomc: 5 |
Daily: 5 | 30 min–constant |
Hospital admission: 7–9 Discharge: 1 Now: 1–9 |
5–10 | Walking, social, recreation, ADL | “I walked from my car, leaning on the building, leaning on cars, I’m like what the hell is wrong with me? This is not me at all. Leaning on the side of the building, people would catch me”. |
| Chest pain |
3 (38) Spontaneous report: 3 Current symptomc: 3 |
Daily: 2 Varies: 1 |
– |
Hospital admission: 5 Discharge: 5 Now: 3–10 |
– | ADL, sleep, walking | “It’s in the area where my heart is… what was most uncomfortable was the piercing in the back…” |
| Cough |
2 (25) Spontaneous report: 2 Current symptomc: 0 |
In hospital only: 2 | 2 min–constant |
Hospital admission: 8 Discharge: 5 Now: 1–2 |
– | Recreation, walking | “I had a cough, a constant cough and it was very annoying”. |
| Weakness |
1(13) Spontaneous report: 1 Current symptomc: 1 |
– | – | – | – | ADL, walking | “I was terribly weak. Very, very weak and it frightened me because I wanted to be able to get up and walk around, but I could only walk just a few steps and I was done”. |
ADL, activities of daily living
a0 is “not bad at all” and 10 is “as bad as it gets”.
b0 is “not at all bothersome” to 10 is “extremely bothersome”.
cPatients reported current and past symptoms. Current symptoms are those a patient is currently experiencing. Spontaneous symptoms are those that were mentioned without probing from the interviewer
Only symptoms/impacts reported by at least 3 patients in the entire sample are included. Not all patients who reported a symptom provided information on each dimension (e.g. frequency and duration)
Saturation was not reached in the acute patient subgroup, as several patients reported novel symptom concepts through the 8th interview; however, no additional interviews with acute patients could be completed due to recruitment challenges