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Table 3 Patient quotes on impacts of AL amyloidosis on HRQoL

From: Content validation of the SF-36v2® health survey with AL amyloidosis patients

Theme Subtheme Number of patients reporting impact (n = 10) Representative patient quotation
Social Social 10 I used to be very busy with friends and cook and work and run a church. Now, I am mostly home [the] majority of the time because you don’t feel able enough to go out or the medicine that you are on makes it hard for you to go out. Female, age 53
Leisure time 9 So, we had to go home and cancel our life. We had a cruise planned and paid for and birthdays and parties and things like people do. Female, age 76
Hobbies 4 I really, really miss being able to hike, I miss being able to train. I did a lot of training of our animals...and I miss being able to do that a lot because that was very satisfying to me. Those are things that really bother me. Female, age 49
Physical Mobility 9 Bathtubs and showers are the hardest and getting cleaned up, it makes me very short of breath. Female, age 53
Exercise 6 I have worsened to the point where I can’t even walk up a flight of stairs without buckling over. I’m just really struggling for air. Male, age 41
Appetite/Food restrictions 5 I started to lose some of my appetite. Not the least of which is because now I can’t taste… my mouth wasn’t producing much saliva. Everything tastes like cardboard. Disgusting. Male, age 62
Roles Work 7 It’s caused me to have a lot of absences, which I have never had. For a while there it seemed like I was going to the doctor every other day I’m sure that affected my performance at work. Although I tried to be mindful of it, I don’t think you can totally just [block] out all that stuff. Female, age 63
Family roles 9 Even something like getting the screens on the windows. I’ve got to go up a bunch of flights of stairs to do that. I can’t get that done. I feel totally useless in that regard and that’s part of the depression. What am I going to do? Do I put everything on my wife? I can’t do that for God sakes. That has been affected big time. Male, age 63
Household chores 5 Ability to take care of the home is gone. I can’t do anything. Male, age 63
Emotions Anger 3 I just think that people not listening just made me angry. Not that I vented at them, but I felt betrayed. I guess I had always had doctors that listened and I don’t know whether changing from where I live to a bigger city, they just didn’t seem to hear me. Female, age 60
Worry 8 I have so much more concern with, you know, what’s going to happen to [my children]. You know, what happens if I die next year. Male, age 41
Cognition 5 But when I have those spells where I kind of just go away for a while, I think well I’m not able to concentrate, I can’t…how am I going to finish this task? I can’t seem to keep my mind on it. Female, age 63
Depression 5 Not knowing what it is at that point was very scary…It was very depressing at first and very hard to understand because…I didn’t have a clue at first of what it was or what it did or how it would affect my life…It has affected it in many different ways. Female, age 53