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Table 2 Description of four themes and example quotes

From: Secondary outcomes and qualitative findings of an open-label feasibility trial of lisdexamfetamine dimesylate for adults with bulimia nervosa

Theme

Participant quotes

Theme 1: Reprieve from the Eating Disorder

Participants reported experiencing a reprieve from ED behaviors, urges, and cognitions while taking LDX. Participants describe being surprised by how easy it now felt to abstain from binging and purging. They reported that stress from their ED and from the cycle of binge eating and purging was alleviated.

Quote #1: “It’s a weird adjustment to make, suddenly to not just have so much of my day consumed by that, that cycle, right? Like every day too…, I was never feeling good, I was just taken over by it and I didn’t have like a desire to do anything really or like put myself in situations where I’d have to do things, and to not have that kind of hanging over me anymore was a strange feeling but a good one. It was like suddenly having like this huge weight not there anymore.” [Participant #4]

Quote #2: “Yeah it’s been interesting to see how life is without having to worry about binging every day and purging every day and just obsessive thoughts about being hungry all the time and then being upset because you don’t want to eat bad food but you want to. So yeah, ‘cause I experienced that for like 10 years straight so it’s been like a lot of stress lifted from not having those thoughts.” [Participant #13]

Theme 2: Improvement in Function and Quality of Life

Participants reported improvements in many domains affected by their ED. For example, they reported improved ability to function at work and school and engage with others socially. They described experiencing increased feelings of connection with their families and loved ones, and improvements to their mood.

Quote #3: “I didn’t even, even answering the questions now compared to the beginning… I didn’t really know how much it [the eating disorder] influenced my life until it wasn’t as prevalent and it wasn’t there every single day. Like that drive and that obsessive thought process behind it, I didn’t even realize that was a component to it so just realizing that it can be different than it was [has been the best part about participating].” [Participant #14]

Quote #4: “Just like a) financially definitely is a big one. While I was on [the medication] at least, being able to go out with my friends, and you could go out to eat or whatever and you wouldn’t have any issues, that is a big thing. So like socially too, and with my family things were a lot better too… I think probably because I didn’t realize before how you do become agitated when you are always having these thoughts and you’re not agitated at the people, you’re just agitated in general. So I think I didn’t realize how bad that was [before] versus now.” [Participant #1]

Quote #5: “Oh my goodness, so radically really. Like I just, I just feel so much more in control of who I am and I feel like I’m a better mom, I feel like I’m better at my job, I, you know, I just feel, I feel better, I feel, you know. I don’t know how else to put it but it’s, it’s really changed.” [Participant #15]

Theme 3: Renewed Hope for Recovery

Participants often reported that prior to the trial, they felt hopeless and had little confidence in their ability to stop binge eating and purging or to fully recover from their ED. Participants expressed that taking the medication and experiencing the subsequent improvements in ED behaviors during the trial offered a newfound sense that recovery was possible.

Quote #6: “I felt like I had my life back. Like, and that makes me get super emotional saying that, it sounds so corny, but it’s like I haven’t been able to do what I’ve been doing the last two months in years, and I can remember how driven and how ambitious and how hard working I used to be, and that all got taken away with the eating disorder…, and I hadn’t realized how much the eating disorder itself had taken away from my life, and like being on this medication just made everything easy. It made my like life function, I could do what I wanted to do, I didn’t have to even think about wanting to binge and purge, which I haven’t had in years…, I could see the light and the hope of what life could then be like again …, I don’t know if I’ve ever really gotten that since this eating disorder started.” [Participant #3]

Quote #7: “I’m feeling a little bit more hopeful that I can change this, there was a time that I felt, you know, like this will just be how I, how life is, which was a very sad thought to think but I’m starting to get some, see the light at the end of the tunnel and see that you know, change is possible and um I can have a life free of this hopefully.” [Participant #16]

Quote #8: “It’s given me a lot of hope and that’s been a really exciting thing. I felt really lost for a really long time and it’s given me, and in some aspects more than others definitely, but it’s given me a sense of normalcy that I really enjoy.” [Participant #17]

Theme 4: Ability to Normalize Eating

Participants described an increased ability to implement more consistent meal structure and/or to improve existing meal structure while on the medication. Participants reported increased flexibility and freedom around food that allowed them to eat a greater variety of food, as well as increase consumption of “fear foods”. In some instances, participants reported that the medication normalized their appetite, either increasing their ability to experience hunger and fullness cues or normalizing their “insatiable” appetites.

Quote #9: “I feel like the medication was like a nice reset so I can like, I got myself on this whole plan of I’ll eat every 3 hours and I’ll eat vegetables or whatever and I was just able to like start fresh you know? And now I can hopefully continue that for the rest of my life.” [Participant #2]

Quote #10: “Prior to the study, say if I was trying to stop binging and purging I think I was super restrictive on what I would eat when I didn’t really realize that back then. There was foods I almost had deemed bad foods and now, slowly over the last couple of weeks I introduce different things that maybe prior to this I wouldn’t have eaten if I was trying to not binge and purge.” [Participant #1]

Quote #11: “I think [my appetite] probably has gone down a little bit but I’ve also been able to sort of listen to my hunger cues in ways that I wasn’t able to before. Even though I still sort of eat no matter what, but I’m aware of them. Sometimes I would try to listen to my hunger cues before but they were so out of whack I had no idea. I didn’t even really know what it felt like to be hungry or full or yeah, so it’s definitely sort of helped me get to a stable place where I can start sort of remembering what that feels like.” [Participant #18].