Table 2 Overview of symptoms emerged during concept elicitation

Fatigue/Tiredness (N = 16, 100.0%)

Spontaneous: 15

“Oh, just well, I get very tired because my blood count is – I produce no red blood cells. So, I get very tired.” (63-year old male with INT-1 risk MDS)

On probing: 1

Shortness/short of breath (N = 14, 87.5%)

Spontaneous: 11

“Well I don’t think I’ve had a good day. Every day is, uh—I, I’m very tired, very short of breath.” (61-year old male with INT-1-risk MDS)

On probing: 3

Weakness (N = 13, 81.3%)

Spontaneous: 2

“… well my strength level since I’ve been diagnosed with MDS, I’m saying is probably decreased about 35%.” (84-year old male with low-risk MDS)

on probing: 11

Low energy (N = 12, 75.0%)

Spontaneous: 12

“As far as my activity level, I get transfusions. I get two units of blood every two weeks, and when I’m winding down and getting close to needing a transfusion, my energy level gets a lot less.” (63-year old male with INT-1-risk MDS)

On probing: Nil

Bruising (N = 10, 62.5%)

Spontaneous: 0

“… just the slightest touch against a corner or a hard surface and I will end up with a bruise.” (76-year old female with INT-1-risk MDS)

On probing: 10

Bleeding (N = 9, 56.3%)

Spontaneous: 3

“… well sometimes it takes off the top layer of the skin and I will bleed a lot, but the bruise is, um—I mean they’re really not that big and they just, they just go away eventually (76-year old female with INT-1-risk MDS)

On probing: 6

Weight loss (N = 6, 37.5%)

Spontaneous: 0

“I’ve lost, uh, 30 pounds in the, uh—35 pounds in the last six months, uh, due to lack of appetite I guess.” (71-year old male with INT-1-risk MDS)

On probing: 6

Loss of appetite (N = 6, 37.5%)

Spontaneous: 4

“A bad day, uh, I pretty much stay in bed, I’m nauseous, and I can’t eat. And I’m in horrible, horrible pain.” (64-year old female with INT-1-risk MDS)

on probing: 2

Pain (N = 5, 31.3%)

Spontaneous: 3

“But in my bones it’s like in my back and my hip bones, um, my back, my shoulders, um, my legs. It’s muscle and bone pain. Sometimes it feels like somebody is sticking a knife in my bones.” (64-year old female with INT-1-risk MDS)

On probing: 2

Infections (N = 5, 31.3%)

Spontaneous: 1

“I have, um, reoccurring UTIs quite often in the last two or three years.” (76-year old female with INT-1-risk MDS)

On probing: 4

Rashes and red spots (N = 5, 31.3%)

Spontaneous: 1

“no, nothing, ah, unusual other than, you know, I got the impetigo thing which does, you know, affected the skin.” (72-year old male with INT-1-risk MDS)

On probing: 4

Heart palpitations (N = 5, 31.3%)

Spontaneous: 5

“I guess the worse is when I’m lying down in a peaceful rest, I can actually hear it, my heart like pounding, pounding,

On probing: Nil

pounding, pounding, pounding.” (64-year old female with INT-1-risk MDS)

Fever (N = 5, 31.3%)

Spontaneous: 1

“Sometimes. Um, the doctors, they—um, I think it’s 100.4 if I—it’s lower than a normal person. So if I go above that, then I have to go to the emergency room to bring down my temperature.” (51-year old male with INT-1-risk MDS)

On probing: 4

Dizziness / lightheaded (n = 4, 25.0%)

–

“… dizziness, uh, much more so when, when getting up, when maybe turning quickly.” (63-year old male with low-risk MDS)