Table 2.

Illustrative Quotes: Staphylococcus aureus Bacteremia

Quality of Life Domain	Major	Minor	None
Physical	• “I lost a lot of weight. I used to be almost 130 pounds. After the infection, I was 89 pounds. I lost really drastically. It was bam and I was really tiny—and weak.” Female, age 20 [CONCEPTS 1, 2, 3] • “Well, I guess it varied over time but right now it’s physical... I just don’t have the strength—I don’t have strength in my—I mean, I can walk around but I get fatigued. So I’m cutting back on all physical activities.” Male, age 71 [CONCEPTS 1, 2]	• “As far as the effects, I just have to be much more careful whenever I reach for spices or items that would be above shoulder level, when I’m cooking, whenever I’m getting things out of the refrigerator, when I’m showering. I have to use a brush on a stick in order to reach areas that I used to reach with my hands and a washcloth. It’s just a matter of making slight adaptations to the physical limitations.” Male, age 60 [CONCEPTS 1, 3] • “Well, it never did really impact me all that much. I can still walk, and do everything I ever did. So, it was really not that big an impact. Those times I had an I.V. in my arm, and just had to work around that.” Male, age 77 [CONCEPTS 1, 3]	• “Physically? I haven’t had any complications or anything with it.” Female, age 47 [CONCEPT 1]
Functional	• “And it was irritating. It was a pain because it interrupted our life, really. We had to plan everything around it—our bed schedule, our sleeping schedule.” Female, age 75 [CONCEPTS 1, 2] • “So, personally, my living conditions have been put on hold as well, I guess. So, I’ve got a lot to do later— about September or so… My ability to function, I guess, would be affected the most. My ability to function in my normal life.” Female, age 56 [CONCEPTS 1, 2]	• “If I wanted to go somewhere, we would just simply take the meds with us and administer them wherever we had to be.” Male, age 47 [CONCEPTS 1, 3] • “Well, actually, even though I’ve had the PICC line and the bag, I wasn’t allowed to drive, but that didn’t keep me from being able to ride with people, and go out to eat, or go to the grocery store, go shopping. It didn’t limit that, and I think that was good.” Female, age 65 [CONCEPTS 1, 3]	• “Going forward, it’s kind of like taking aspirin in the morning, the antibiotic pills.” Male, age 78 [CONCEPTS 1, 2, 3]
Emotional	• “It was so emotionally bad. I would just cry at night. I was like, “Oh, my god. I’m never getting better. This is it for me.” Female, age 20 [CONCEPTS 1, 2, 3] • “It’s hard to sit in a chair all day and maybe not feel depressed or thinking why am I not up walking more? Why am I not able to do more? Why am I not able to control things better? So, life for me for a long time was either a chair or a bed. And that was a hard way go for a very active person.” Male, age 47 [CONCEPTS 1, 2, 3]	• “ ...it’s kind of scary sometimes. And anytime you’re going through any type of sickness, you’re gonna worry about it. So, the impact wasn’t too bad, but it was there.” Male, age 59 [CONCEPTS 1, 3] • “But just emotionally, probably, just a little bit. But it’s kind of who I normally am.” Male, age 57 [CONCEPTS 1, 3] • “Not really difficult, just kind of a little overwhelming. I didn’t want anything to happen to it [referring to PICC line] while I was at home. When I’m at the hospital, they’ve got nurses running around all over the place. But for me, to be sitting at home, and I’ve got this central line that they’ve got me having access to, sometimes it’s a little overwhelming because I was scared that something was going to happen to it while I was at home and then I would have to go back in, or do whatever. I wanted to make sure I was taken care of the best I could, so I wouldn’t have any added complications… Mentally, and emotionally, it showed me that it’s okay to be a little apprehensive. It’s okay to be a little overwhelmed with what’s going on with my body, or have an infection I’ve never had in my life.” Female, age 47 [CONCEPTS 1, 3]	• “I don’t really think it has. I mean I’ve not had any emotional outbreaks or anything worrying about it. Like I said, having been through it before made it a lot easier to say, “Okay, well, we’re dealing with it again. We just do what we gotta do and move on.” So, I don’t think it’s had a real emotional impact on me.” Male, age 58 [CONCEPTS 1, 3] • “It has not impacted me at all. I’m good, and positive, and always have been.” Male, age 77 [CONCEPTS 1, 3]
Cognitive	• “You gotta understand, I was not in the right frame of mind at all during this. It was a fairly traumatizing event. What I’m telling you today is as accurate as I can possibly recall.” Male, age 45 [CONCEPTS 1, 2]	• “A lot of things I deal with head-on but not so much as it made me sad or depressed or anything. It’s sorta just frustrating me and pushing me to try and do better at some things I guess I can say—Not much of a mental struggle with it. It hasn’t really impacted my mental much at all. It’s just only really frustrated me some because of the things I can’t do versus the little things that I can do. So, I guess that’s where I’m at as far as my mentality.” Male, age 42 [CONCEPTS 1, 3]	• “I don’t know if it really impacted me at all. Like I said, it’s just another setback.” Male, age 50 [CONCEPTS 1, 3]
	• “It’s definitely made me more aware of when my body isn’t responding the way it usually would in a way, so I’m definitely more aware if something is off with my body, like medically or if something just doesn’t seem right, things like that. It’s definitely made me far more aware than what I already was. So, I’m more eager to get answers sooner instead of waiting around and putting it off because I don’t wanna pay the copay, or drive to the doctors, or something… Lasting impact, definitely being more aware of what my body is telling me and to take is seriously. I mean, your body is supposed to function at a certain level for a reason, and if you feel like it’s not, something could be wrong.” Female, age 30 [CONCEPTS 1, 2, 3]	• “I really didn’t think much about it, just hoping they can get rid of it before it got worse.” Female, age 73 [CONCEPT 1]
Social	• “I think most impact would have been social, just, like I said, because it took so much time during the day to make sure you got the treatments done and do everything carefully to avoid any infections or anything through the PICC line. I think that had the most impact.” Male, age 58 [CONCEPTS 1, 2]	• “As I progress and feel better, I think my strategies are better. I feel I’ve gone to church twice; I’ve gone out to dinner once. I’m trying to get out and do a little more than I was not comfortable doing when I first got home.” Male, age 47 [CONCEPTS 1, 2, 3] • “I’m president of a local organization and I’ve not been able to do my job with that except by phone or email and that kind of thing. But everybody’s been good about helping out on that, so that’s good.” Female, age 56 [CONCEPT 1]	• “It actually didn’t impact me at all because I was always very open when a friend, or a family member, or a coworker had a question about my PICC line, or my medication, or see how I felt. I’m not afraid to answer questions, so it didn’t really, I guess, bother me in terms of socially. So, it wasn’t that bad.” Female, age 30 [CONCEPTS 1, 3]

The quality of life domains are both overlapping and distinct. These 26 selected quotes represent exemplars from 19 different participants with 5 of these with 2 quotations and 1 with 3 quotations

Abbreviation: PICC line, peripherally inserted central catheter.