Table 6.
Select quotes grouped by interview topic
| Description of molluscum contagiosum |
| “He’d just say that he has little bumps that are his boo-boos, on his leg or on his arm. I would say it’s like little warts all over your skin, and some areas have more than others, but then they also turn into big sores and pustules.” |
| “He just calls them his bumps. It’s kind of warts.” |
| Signs, symptoms, and characteristics |
| Itch |
| “They’re itchy and quite bothersome.” |
| Pain |
| “They also turn into big sores and pustules, and they’re very painful when they get to that point.” |
| Scarring |
| “Yes, we have scarring. They pretty much look like chickenpox scars, which are like a lighter-skin, circular scar.” |
| Location |
| “Before the study he had some all over his eyebrows and around his eyes, and he had them on…a couple near his hands in the study, and then on his legs. He had a lot on his legs, lower extremities.” |
| Size |
| “Most of them were little. Some of them were medium and then some of them were big and huge.” |
| Number |
| “There was probably at least 10 on his face, probably at least 10 more on his legs. I mean, I’d say a good 20 lesions on his body at least.” |
| “Yes. I think on our first visit I counted 67 bumps.” |
| Contagiousness |
| “I personally feel like the contagiousness of it is the most alarming part of it for me. Realizing how contagious they are and I’m giving my kid a hug, consoling my kid. It’s frustrating because you can’t really do much about that.” |
| “It was primarily because he has a sister. They are 20 months apart and they used to bathe together all the time. That was a big thing because they had to stop taking a bath together. And they really enjoyed bathing together and playing in the tub.” |
| “It definitely spread. It was spread through contact. Her largest molluscum were on her left shoulder and upper arms. And they continued to spread to up her arm and started to form on her chin and jaw line on that side.” |
| Visibility and contagiousness as bothersome aspects of MC |
| “The fact that they turn into these sores, and they leave scars. That’s the most bothersome, because every time a molluscum, I guess, bump turned into a sore or turned into a pustule it would leave somewhat of a scar, and it wouldn’t go away quickly.” |
| “I didn’t like it being on her face, because she is in school, and I’m a schoolteacher, and I know how mean kids are. And so, I didn’t want people making fun of her either. And I didn’t want it to keep spreading and not … the spreading them, the contagiousness.” |
| “I feel bad because there was nothing we could do and I know it was bothersome to her, so it always bothered me that it felt like we were doing nothing to make it better. And then just the added complication of trying to remember to not have the kids together, make sure her towels go in the wash after use, and nobody else is using the towels that come from her and trying to stop it from spreading. It took a lot of effort. And then in the end it happened anyway.” |
| “Yes, we avoided going to the lake right before the clinical study, because we were worried they would get infected from the water.” |
| “I wasn’t worried about them being contagious, but my younger brother got molluscum from me. So I would say they were contagious, because he got them.” |
| “The one on the chin I didn’t like because others could see them but the rest of them I didn’t like them because I didn’t like them on my skin.” |
| “The visibility, the location. Just she didn’t like people talking about it.” |
| Self-consciousness/embarrassment/worry |
| “It definitely made her more self-conscious.” |
| “She would tell me that kids would point it out at school and point at it and laugh and say that they didn’t want to play with her: |
| “He would just make comments like, ‘I hate them so bad; they look so gross, I don’t want people to see them, I wish they would just go away,” things like that. And then when we’d go swimming, he’d be like, ‘I don’t want to take off my shirt.’ Just things like that.” |
| “But other than the looks and where it was, and her self-esteem; thinking people are looking at her or talking about her.” |
| “Only the one on my chin [I was embarrassed]. Every time we went out into public.” |
| Clothing choices |
| “Yeah, I’ve had to put him in pants before when his sores were bad instead of shorts.” |
| “We did avoid wearing certain … any clothes that had direct contact, like hard pressure on there because it was rough and they’d become uncomfortable to her because she’d rub them raw if she didn’t have a band-aid.” |
| “Probably would be having to dress differently. That’s unfortunate … well, I mentioned living in [name deleted] and being in the heat of humidity, this is uncomfortable and then you get hot and sweaty and then things start to itch and then guess what? Now you have more itching and you’re trying to keep them covered you’re trying not to expose anyone else but you’re also sweating and dying and it’s not comfortable. It’s not fun. People are looking at you, like you’re weird too because it’s 110 degrees outside and you’re wearing a long sleeve shirt.” |
| Physical activities |
| “There was one time where he didn’t get to go kind of swim with friends because of the sores, because I didn’t want them to spread.” |
| “She plays softball. Running sometimes would … the way that her pants would rub against them because they are up on the top of her thighs. That would be bothersome so it would make her not want to run because that hurt.” |
| Being teased/treated meanly |
| “I think there was a little bit of bullying at school around it.” |
| Clinical trial expectations |
| “I really wanted to see if there was something that would work on it, and his molluscum bumps, because we had gotten a bunch of different ointments and I just didn’t feel like they were … I felt like they were hurting him, because he didn’t like them, he noticed them. I felt like they didn’t work very well, so I just was open to try something else.” |
| “I was thrilled that they had some kind of way to treat her because I’ve never been given an option before.” |
| “She had very large molluscum compared to the size that our son had and they seemed to be spreading at that point. So, I was very much hoping to find a resolution because had tried many of the home remedy types of solutions with my son and my daughter and they were not working so I was extremely excited to find a study to hopefully help her stop the spread. Especially since they were on her face at that point.” |
| “I was hopeful that she would be one of the kids in the study that receives the medication and that it actually helped to clear up the molluscum after we’d been going through it for a year.” |
| “I was hopeful that they would put something on her bumps and that they would magically go away. That they would disappear and that we would be molluscum free.” |
| “Because he wanted them to go away, and we’d already tried something and didn’t work completely. It left him with some scarring, so we thought we could find something else that would maybe work better without the scarring.” |
| “Because it was bothering her quite a bit, it was pretty itchy, it would burn, and she complained about it a lot.” |
| Improvements during the clinical trial |
| “It seemed like it improved when I say that the bumps decreased and disappeared quicker than our previous medicine we were using. There was less of an inflamed time for each bump. Well, I guess the pustule inflammation time was smaller.” |
| “It has lessened because the size of the molluscums shrank pretty quickly, so the smaller that they became, the less areas she had that were irritated, so the less itching she did.” |
| “They’re almost all gone. Visually you can’t really see them, you can still feel where they were but for the most part it’s not noticeable at all.” |
| “I have noticed some like where he’s cleared up in some places like in his neck area, a lot of those have went away. It’s just mostly now confined to just, like I said, his upper torso and his belly area. He has had some that popped up on his arms and those have went away. Some on his knees and went away.” |
| “The ones on her face went away, so I’m happy.” |
| “Yes, since most of his bumps are gone, or pretty much all are gone that we don’t really have a concern of it spreading more on him since there’s none on there.” |
| “They actually did clear up. I think she only has one small area left, one small lesion left. So they almost completely cleared up.” |
| “I want to say yes, that they went away faster, because they would go away within 4 weeks of treatment as opposed to months of them, letting them go away on their own. So, yes, they got treated faster.” |
| “Yeah, she doesn’t itch as much, at least not in those areas anymore. She’s not complaining about the bumps, the itching, the burning and so, yeah, that’s pretty much it.” |
| Improvement in most bothersome sign or symptom |
| “She doesn’t complain of itching at all anymore.” |
| Improvement in most bothersome impact |
| “I felt much better just finding that there was something that we could do and that it worked for him. As a parent you kind of want to be able to fix things.” |
| “I teach Pilates. I’m in fitness. So I want to wear a tank top, I want people to see that Pilates does wonderful things for my triceps but if I’ve got a low hanging armhole in my tank top, that could be an area where I’m going to have some spots. Well, I can wear that cute little tank top now because I’m not worried about having all those spots.” |
| “I feel like that the bumps went away and I didn’t notice the scars. I didn’t even notice where they were as much as I did before with the other ones. So there was less scarring, there was less noticeable marks when they went away.” |
| “I mean, like I said, we didn’t have too many before. We just had a few because of the facial ones, and like I said, the swimming thing. I feel like there were less impacts while we were on the study because of the medicine we were taking. I felt like it was helping.” |
| “Yeah. She’s pretty much back to her normal self, so I don’t really have to worry about anything [worrying about the contagiousness of it, about it spreading, dressing her a certain way] anymore.” |
| Change in number of lesions |
| “I would say many less than at the beginning of the study. Sheer numbers. She had so many the first time we went that we were flipping her from back to belly counting all of them on her legs. And the last visit we went, we were having a hard time figuring out if there were even any that were actually still active. So, it just, like you’re saying, from 10 to 1 small one left.” |
| Meaningfulness of change |
| “The most important improvement is the resolution of the spots with a lack of scarring.” |
| “If I had 1 small one left yeah that’d be fine. Two small ones. Yeah, that’d be fine too.” |
| “It’s been the same location since the beginning. I’ve always had them in that area so I would say the location doesn’t matter to me as much as the number of them.” |
| “Yes. That’s exactly what I wanted. I just wanted to be done with the bumps all over her. They just kept getting worse and worse and immediately it just started clearing up and she’s happy they’re gone and I’m happy because I don’t have to worry about them spreading to everybody else. And that’s it.” |
| “Yeah, extremely important. That way we’re not having to watch our daughter suffering through pain, and just constant itching, and we don’t have to worry about her spreading it to other people either.” |
| “I think the change in the number would be more significant to me. If they … if we treated some and then some others popped up, I wouldn’t see the study drug being a failure.” |
| “At least half. Just because it would, I guess, an overall improvement, I think. Any improvement I guess is good, but that would be a great improvement.” |
| Level of satisfaction |
| “Very satisfied. Because we did see so much improvement with her not just in the physical aspect of it, but the emotional aspect of it too, I guess you could say. And just being able to see her go back to the way she was before everything.” |
| “I’m very satisfied because the visibility and potential scarring was my number one concern, and that concern is now eliminated because the molluscum are gone.” |
| “Very satisfied. Because I went into this just thinking that they would … it would take a while to do anything, any kind of changes and within that first month, so they started disappearing real fast. I didn’t expect it to happen this fast.” |
| “Very satisfied. Because we went from 25 to 30 molluscum bumps, down to practically zero. And so her legs look better, it’s something she won’t be self-conscious about, and it’s an irritant that we don’t have to deal with, at least for the time being.” |
| “I was very satisfied after I saw a change after taking the medication. After starting the medication, it was nice to see that change of them going away, even though sometimes she’d wake up and have more, and then other times wake up and have less. But the fact that they’ve gone down so many, going from so many to so little, I’m very satisfied.” |
|
“I would say satisfied. I think that learning a lot about what this was and kind of how these processes work. I’m hopeful that this is the beginning of the end for them because everyone has said about a year. It’s been about a year.” “I would say neither satisfied nor dissatisfied. I’m just kind of indifferent to the results. I didn’t like…I mean I knew it was a study, it may or may not … there may or may not be results and I’m not sure that they’re less significant results, so it doesn’t bother me and I’m not thrilled with it either.” “Probably neither one [satisfied or dissatisfied]. Just because he’s got so much more and didn’t get rid of many.” |
| “I would probably say dissatisfied. Like I said, it became an ethical quandary for me of just being like, have I done something wrong in … what’s the bigger picture here and trying to outweigh the balance [of treatment and discomfort].” |