Table 2

Illustrative quotations by theme

ThemeIllustrative quote
Understanding of diagnosis
Ambiguity‘It’s like, “You don’t have anything else so it must be this” versus “You have all these other symptoms, you have these labs and diagnosis”. I would rather have a diagnosis that comes about by examining evidence that I do have saying “OK based on this data you have this disease” not “Based on the absence of all this other data you must have this disease”.’ (p 112)‘I wasn’t sure whether it was two different things I had or the fatty liver turned into cirrhosis. I always thought that I probably had fatty liver but didn’t know about it. Then when I did find out something was wrong, it was like “Oh, it’s cirrhosis.” It’s like I missed the whole fatty liver treatment.’ (p 118)
Related to obesity/metabolic syndrome‘Well, as I understand it, I have a fatty liver that has been determined to not be from excessive alcohol consumption but from I guess a metabolic condition that is in my genes.’ (p 112)‘I know that, for me, I believe it was hereditary and—a combination between being hereditary and my life choices—diet and stuff.’ (p 127)
Incidental testing
 Liver enzymes‘They found out that I had high liver enzymes, and they sent me to see a liver specialist, and that’s when I found out I had fatty liver disease.’ (p 28)‘Didn’t really have any symptoms of anything, just had some punky bloodwork that a doctor wanted checked out and did some further testing and this is what they came up with.’ (p 142)
 Imaging‘I found out by—I have also a disease diverticulosis and pain in my intestine. I had pain and I went to my doctor and he sent me for a test—a what’s it called? A CT scan. They found my liver was enlarged.’ (p 129)‘I started having some pain in my left-lower rib area, the front. I went to the doctor and they said it was a little enlarged. They did an ultrasound and discovered it was fatty liver.’ (p 130)
Behaviour change/disease management
 Diet‘I’m trying to change my diet and try to get my pop cut down as much as I can, and basically trying to get everything done to where I can reverse the damage, so I don’t need to go in for a liver transplant and stuff.’ (p 28)‘I try eating more fruits and veggies. It’s better than what it used to be. A lot less eating out ‘cause it was at least twice a day, every day. Now it’s two times a week.’ (p 54)
 Exercise‘I make sure I got to the gym at least three times a week. Before I’d be much more lax about that.’ (p 26)‘I generally spend two hours a day engaged in some sort of exercise. Elliptical, stationary bicycle and walking. Strength training I do three times a week, but I do cardio daily.’ (p 135)
 Weight loss‘Since I started, I’ve dropped seven percent of my body weight. I’m doing training to take more off. Overall I’ve seen a difference in myself, but I haven’t hit my own personal goals yet.’ (p 108)‘Like I said, I’ve lost all that weight. Not a lot of weight, but I’m fitting into clothes I couldn’t fit into before. Ten pounds is only ten pounds, but it’s enough to get me motivated, I guess.’ (p 130)
 Alcohol use‘Well I guess I’ve made one major change. I’ve curtailed my alcohol consumption, which was at a reasonable level, at least a socially reasonable level. I went from about a drink a day to about a drink or two a week.’ (p 112)‘Well, I’m aware that it’s—if someone offers wine or beer or something, no, I don’t do that. I wasn’t a heavy drinker or anything like that, but an occasional beer or glass of wine was nice, but I don’t do it at all now.’ (p 114)
Barriers or aids to treatment
Social support, social norms‘Anything outside my immediate family. There’s really not much support there. In fact, if anything, there might be a little bit of an obstruction from my extended family because most of them are very overweight as well. Maybe they don’t like seeing that you can change if you want.’ (p 108)‘[My family] is more concerned on what they can do to help me…My family members are now doing research to see what they can do to help me. Making me more cognizant of how and what I’m eating.’ (p 143)
‘Honestly…Society doesn’t make it easy sometimes. To eat the proper foods. They have all the different fast food restaurants, TV commercials and things like that. I’ve been getting more of the bigger things. The food we eat is probably not the greatest for us.’ (p 56)
Other medical conditions‘It doesn’t feel like a major deal to me. Like I said, I have Ulcerative Colitis. I’m probably more worried about that than about [my] liver.’ (p 26)‘I have severe arrhythmia and my doctors are aware of this. Exercise is not an option for me, at least at this point in time.’ (p 111)
Motivation to change
 High‘You know, I want to be around for a while, so why not adhere to the advice? You know, it’s like anything. You gotta decide if it’s important enough to you. If it is, you’ll change. If it’s not, then you won’t.’ (p 137)‘I have to say that I gave this my 100% shot with all my literature I’m reading, foods, changing my lifestyle, dietician. You name it, I’ve tried it…Cause it is important for me to get this weight off, to get this weight off my liver.’ (p 143)
 Low‘How hard am I gonna try to prolong the rest of my life? It’s more of a philosophical thing. If I was 20 and diagnosed with this disease, I might have a whole lot more incentive to make lifestyle changes to live the rest of my life…I’m gonna do things in more moderation but other than that I’m gonna ride this out however long. When it’s time for me to get off the train, I’m getting off.’ (p 112)‘I’m not sure. I need motivation somehow, and I’m not sure how I’m gonna get myself to stay motivated. I mean, I can be motivated at the beginning, but then things will decline.’ (p 191)
 Enjoyment/HRQOL‘I’m not gonna make lifestyle changes that make me not enjoy my life at the expense of living longer.’ (p 112)‘I’ve tried all those diets where you have to count [calories]…I can do it for a little bit, and then it’s just I can’t stand it anymore. Shoot me in the head. Get it over with.’ (p 118)
 Time‘I have attempted to increase my activity level, exercise. I am far from a fanatic and I don’t exercise every day. It’s a function of time and it’s a function of I hate it.’ (p 112)‘Time is a factor. I get off work late. I’m tired. I have a teenage daughter. I have dogs. I have the house to take care of. It’s a timing factor.’ (p 119)
 Other responsibilities‘After working a full time job, I’m the one that usually does the grocery shopping for the family. I’m the one that does the cooking for the family. I’m the one that does the cleanup for the kitchen and some of the laundry.’ (p 108)‘I know this sounds like an excuse, but I graduated with my master’s a year ago. My father just died, and this is—we’re going on just over a year. It’s been a year of very difficult adjustments.’ (p 119)
Impact of disease
 High‘Actually it was scary. They’re telling ya there’s something wrong with your liver and you need it to live.’ (p 56)‘I wanna be here long enough for my kids. Pretty upset about it… Everything about it is sad.’ (p 54)
 Low‘Well, like I said, I would only be worried if it got worse ‘cause at its current level, it doesn’t seem like it’s that big of a deal.’ (p 26)‘The fatty liver is more like, “Oh, that’s cute.” You know what I mean? It’s just the way it’s—I know they try not to present it that way, but that’s how it sounds to me.’ (p 118)
 Causes symptoms‘I mean I’m very fatigued most of the time, but I don’t know. I think that’s from the liver disease.’ (p 159)
‘I’ve had excessive fatigue and swelling…I’ve had a lot of just faint pain in my liver area.’ (p 127)
 No symptoms‘I didn’t know I had it. I have no feeling involved with it. It doesn’t hurt anywhere. No pain, no nothing. No symptoms that I’m aware of.’ (p 116)‘I wasn’t aware that I had it until…I was going in for that gastric bypass. I wasn’t aware of it at all.’ (p 114)
  • Highlighted quotes represent responses from patients with cirrhosis; italicised quotes indicate respondents >50 years old.

  • HRQOL, health-related quality of life.