Table 3 Overview of impacts of MDS on functioning and health-related quality of life

Activities of daily living (ADL, n = 16, 100.0%)

Spontaneous: 14

“… it’s kind of mentally debilitating because I don’t consider myself that old. I’m 51. But, you know, I should be able to do just household chores and stuff around the house, but I can’t do it.” (51-year old male with INT-1-risk MDS)

On probing: 2

Physical Functioning (n = 15, 93.7%)

Spontaneous: 15

“I used to walk my dog and, um, I found that if I even go a half a block with him my heart starts racing.” (71-year old female with low-risk MDS)

On probing: 0

Emotional wellbeing (n = 13, 81.2%)

Spontaneous: 7

“Um, knowing, you know, knowing the unknown, you know, is, is hard to deal with … and speaking with the doctor last week, out of all the 14 cases that have been studied now and treated, nobody survived. So that’s kind of hard to—it doesn’t give you a lot of hope when you’re looking forward.” (51-year old male with INT-1-risk MDS)

On probing: 6

Social functioning (n = 12, 75.0%)

Spontaneous: 6

“I guess I haven’t felt like, uh, you know, uh, doing some things with the family. I’d rather, um, sit at home and, uh, you know, fall asleep in front of the TV.” (71-year old male with INT-1-risk MDS)

On probing: 6

Sleep disturbance (n = 9, 56.2%)

Spontaneous: 4

“What would impact my sleep would be the iron chelator that I take for the haemochromatosis which comes along as the iron overload for the blood transfusion sometimes that causes leg cramps... And it wakes you up in the middle of the night sometimes.” (63-year old male with INT-1-risk MDS)

On probing: 5

Work impacts (n = 9, 56.2%)

Spontaneous: 5

“I retired at 66, but I hadn’t planned on retiring at that point. But it was at the point where there were mornings where I just didn’t want to get out of bed to go to work.” (68-year old female with low-risk MDS)

On probing: 4