Supplemental Table 1. Medical Outcomes Survey Short Form-36 Domains with Supportive Quotes

Supplemental Table 1. Medical Outcomes Survey Short Form-36 Domains with Supportive Quotes

HRQL Domain / Quote
Physical functioning: Limitations in physical activities due to health / Patient 9014: I can't lift still, there's limitations. But my energy and my stamina are getting -- my lower body is really getting strong because I walk stairs.
Patient 9011: The biggest problem is the lack of physical ability. So that's what gets me the most. It's constantly, it's day in, day out, 24 hours a day. It's, you know, from getting up to use the bathroom, in the night, or just stuff, that you wouldn't think twice about. Going out, I notice every little hill that most people wouldn't notice. Even a slight one will make a difference on whether I'm exhausted at the other end of it.
Practitioner9021: They do more walking, they challenge themselves: like yesterday, someone said since his transplant they walked 1,000 miles. And they were proud of it. So they were keeping track of their walking.And that was their goal, to walk.
Practitioner 9009: I find the patients will report to me but not to their physicians that they'reafraid of moving. They're afraid they're going to break it. I mean that in a very general sense. They're afraid they're going to break their bodies,you know? Like they might do something to injure the lungs or if they move too much maybe they'll develop lung disease again. I know that sounds like a big stretch, but that's really stuff they talk about.
Role Physical: Problems with work or other daily activities as a result of physical health / Patient 9011: Because going clothes shopping, it's like I can't walk around the stores, I can go from the car to a store. Going in and trying clothes, I just can't do it. It's hard.
Patient 9015: Activity was always very important to me: working out-- I was teaching 12 classes a week working full-time, and that's when I thought, ‘Well, I'm so alive, I'm accomplishing so much and I'm affecting people's lives,’ I felt very productive. And then I got sick and I wasn't like that. And now that I have gone back and actually started employment teaching again and working out myself, my quality of life is back. I feel like I have my life back.
Practitioner 9003: Just being at work and trying to be the regular employee that you were before transplant, it is just going to be too much for them. They just don't have the stamina… and then it's a choice that they have to make of, “Do I go on permanent disability?” They really struggle with this.
Practitioner 9002: A patient who was doing well, he was working as a police officer before transplant and wanted to get back to being a police officer. Even though everything went smoothly with transplant, but [he] could never ever pass the physical fitness test to get back to being a police officer again. So that impacted his quality of life that he couldn't get back to the job that he enjoyed so much. Sure, he could run, lift, carry heavy objects, do a flight of stairs, but he just couldn't quite pass that physical fitness test that he needed in order to be on active duty again as a police officer.
Bodily Pain: Pain severity and its interference with normal work / Patient 9014: I had numerous surgeries and none of them took the recovery time or had the amount of pain level that this one did. Yeah. I mean, the small bowel obstruction, I had pain before and after the surgery. But it was not near this degree… But at least by week ten I was feeling -- after they got the medications [figured out], I was feeling much better.
Patient 9014: I still have pain where the incision is.Where the wires are. And like, the other night I dropped a pill on the floor and I was at my brother-in-law's and there was a dog, we were dog-sitting, so I readily got down on the floor and when I got up I started to hurt because I pulled the wrong way.
Patient 9013: I still have like an incisional pain at the plate. And I've had this for two years. The sternum is just – I mean it's very sensitive.
Practitioner 9012: That's one thing is the bodily pain causes -- they can't function, they can't do any physical activity so they get depressed about that.
General Health: Self- evaluation of current health, resistance to illness and future health / Patient 9015: I wouldn’t say my health is excellent because I have someone else’s lungs in me..I just kind of stay in the day, in the time, in the present, and know that I am feeling good.
Patient 9013: Physically, I’m ecstatic with the outcome. Compared to before, my health is great.
Patient 9016: Well, there's no question, since the lung transplant, I feel a lot better. Although I might have some of these new problems but I think that is to be expected.
Practitioner9002: Even though they are given a new lease on life…you are never really disease free. If you have cancer you can get totally cured of cancer…after they survive their five years they're like, “Oh, I'm free.”…But our patients, there is no point at which you get that weight lifted off you. You're pretty much -- you have this sentence for life
Practitioner 9003: [Older people] are happy to be alive…they're happy to be feeling better.
Vitality: Amount of time felt tired and energetic / Patient 9013: Physically, I am ecstatic with the outcome. The whole situation has changed my life because now I am exercising, now there's more energy whereas before I wouldn't do that.
Patient 9015: My main issue is kind of fatigue… Maybe I am more aware of it because of the transplant too, and there’s certainly issues with medications and things that make you feel different.
Practitioner 9003: The physical symptoms, while they impact them and they can be a source of anxiety, I find that the things that are more difficult for them to manage are like the stamina, lack of strength…
Social Functioning: Physical health or emotional problems interfere with normal social activities / Patient 9011: There was some kind of party going down in the canyon, which wasn't a huge, long walk, but too big for me, so I stayed home. I didn't mind, but it's frustrating when you can't… We went to the river, but anywhere that involved any kind of hill or bank, we couldn't go to, so I couldn't go on the river. I mean there's so much stuff you just can't do -- that I can't do -- which after a while is like, you know, it's hard.
Patient 9011: They[friends] call all the time. A friend of my called on Saturday to go over to a barbeque. It was going to be a Saturday night and I just can't do it. I mean, I do go out occasionally in the evenings, but usually it is afternoon…So, it really is a problem and I think it really affects my social life, especially in the evenings… So,it's like my world has got significantly smaller.
Practitioner 9003: They have to pick and choose where they go and when they go and you know, just the carefulness. So that is a strain on them. And they feel probably a little less vital, maybe a little more isolated.
Practitioner 9005: A lot of these patients [before transplant] are on such amounts of oxygen they can't walk 20 feet without being short of breath. And being able to go back outside and interact with society is very important.
Role Emotional: Problems with work or other daily activities as a result of emotional problems / Patient 9006: [Discussing an altercation with his employer]You know, you can call me mistaken, but you don't sit there and call me a liar. So I asked for a boss and I pretty much stopped the whole floor with my [yelling]. Well, I got home and thought about what I said, because I probably used some language I shouldn't have. I knew I was wrong for my language, but I did flip out, and that's the only bad part I've had out of all the drugs and everything.
Practitioner 9001: There are expectations around going back to work and people find, oh, actually I am not well enough to go back to work…maybe because of fears, emotional issues
Practitioner 9003: She’s [a patient] in her fifties and very vital; she's been transplanted about four years now. Very active, has also formed a social work group of her own and was very active in her husband's business, worked 40 hours a week, went back and she just finally came to me and she said, ‘I just can't do it. I'm at the physical and emotional breaking point’ I think emotionally they change too, as far as their priorities, what's important to them.
Practitioner 9002: Physically, they may be doing fine and they may be ready to get back out there and feeling like their health is getting better, but then a lot of them go through this period of depression. We want to shake -- you want to say, ‘You are doing great, you should do… it's hard to understand exactly. I don't think we do a great job of picking it up early enough, and it definitely impacts their ability to get out there and enjoy life again.
Mental Health: Amount of time felt emotional distress (nervous, down in the dumps) and well-being (peaceful, happy, calm) / Patient 9011: As cliché as it may sound, I do wake up feeling happy to be alive every day.
Patient 9012: When I got the call [for transplant], I didn’t really have any anxiety. I was really, genuinely excited. I woke up [after transplant] and it was all good. I’ve always had that kind of outlook where I know that it’s going to be OK and it always is OK, you know?
Patient 9013: I’m not a worrier anymore.
Patient 9015: Before I had a transplant, probably I was more fretful about things than I am now. Because I was almost dead. Now I'm fully alive again, so I try not to worry.
Practitioner 9021: They’re always anxious and they don't the reason why.
Practitioner 9003: They literally most of the times will say, “I don't feel depressed.” I think part of that from my take is they don't want us to think they are ungrateful or that they are sad, and so we try to talk to them and say ‘No, this is not because you are sad. You can be chemically kind of messed up from all the medications, you almost died getting to transplant, you've got someone else's organs in your body. It was a huge ordeal, it was life risking surgery, so you probably have a little PTSD. Go check it out with someone.’ We try to encourage them.
Practitioner9021: They’re [patients] always anxious and they don’t know the reason why. It’s just a feeling they have.
Practitioner 9009: They describe themselves as having a radio on in the background all the time, that there’s kind of a constant running thought, they’re hyper vigilant, they’re anxious.

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