Table 3 Phase I Concept Elicitation Results
Frequency | Illustrative Quotes | |||
|---|---|---|---|---|
Concept | Adults (N = 20) | Adolescents (N = 10) | Adult participants | Adolescent participants |
Description of Sleep | “I have problems falling asleep, I wake up several times during the night mainly due to itching …” | “Sometimes I wake up in the night, but once I get to bed I kind of sit there because my body gets itchy and I have to scratch it a bit before I sleep and then sometimes, I wake up” | ||
Nighttime awakenings | 90% | 80% | ||
Trouble falling asleep | 80% | 60% | ||
Feeling unrested | 60% | 40% | ||
Daytime fatigue or sleepiness | 55% | 50% | ||
Did not get enough sleep | 30% | 40% | ||
Early-morning awakening | 5% | 40% | ||
Frequency of Sleep Disturbance | “… when it’s a bad flare … it’s pretty much nightly … when I’m relatively healthier and my skin condition is kind of being managed better, then I really don’t wake up as much” | “… it’s definitely in the summer and winter because of the dramatic weather changes” | ||
Daily | 70% | 30% | ||
Less than daily | 20% | 70% | ||
Did not specify | 10% | – | ||
How Sleep Disturbance Varied a | “… it depends on how bad and how broad it covers. So, if it’s just in one section, it’s not as bad as sometimes I have it everywhere and it’s really hard for me to fall back asleep because there’s no comfortable position, it’s itching everywhere” | “… one night I might sleep fine, wake up and like itch my knee or something and fall right back to sleep. Then some nights I might wake up three times and be itching a lot and not really sleep that much” | ||
Depended on flare ups | 32% | 20% | ||
Depended on medication use | 16% | 20% | ||
Depended on weather | 5% | – | ||
Varied from day to day but did not provide reason | 26% | 60% | ||
Depended on severity or extent of itching | 5% | – | ||
Sleep did not vary | 16% | – | ||
Duration of Sleep per Day | “I probably only get like maybe 4 h of sleep at night, if that. And then with the naps, it’s probably I’ll only sleep 6 h a day, seven maybe. But on the weekends, I sleep more obviously because I can take a nap whenever I want.” | “… around 6–8 h” | ||
3 to 4 h | 5% | 10% | ||
4 to 8 h | 90% | 80% | ||
> 8 h | 5% | 10% | ||
Awakenings per Night | “… sometimes I’ll sleep the whole night through. Then sometimes I’ll wake up as many as like four time.” | “Usually, I usually wake at least two times a day, so it’s kind of easy to me now to remember how many times I wake up” | ||
None | 5% | |||
1 to 2 | 10% | 40% | ||
2 to < 10 | 75% | 60% | ||
Up to 10 | 5% | |||
Unknown | 5% | |||
Ease of Falling Back Asleep after Nighttime Awakenings b | “Depending on how bad I scratch or how itchy it is.” | “Sometimes … I just get up and I regather myself and I fall back to sleep. But sometimes it’s hours before I can actually finally go back to sleep” | ||
Easily | 44% | 67% | ||
Sometimes easily | 31% | 17% | ||
Difficulty | 25% | 17% | ||
Reasons for Sleep Disturbance | “… the main causes would be eczema and just how bad the flare up is … when my skin is really bad, I get really anxious that I’m going to be scratching all night …” | “[Main cause of sleep disturbance is panic attacks] correlated to when I’m itchy.” | ||
Itching from AD | 35% | 30% | ||
Itching from AD + other causes | 65% | 70% | ||
Impact on Daily Life | “… I feel always drowsy in the morning …. after 2:00 p.m., yeah, I feel really tiring, so I have to take a nap for 30 min at least …” | “I just feel like I’m not performing to my best because I’m drowsy or not paying full attention because I’m tired or I’m thinking about something else just because my head is not fully there.” | ||
Feeling tired, fatigued, or drowsy during the day | 95% | 50% | ||
Impact on work or school | 30% | 60% | ||
Affects mood, increased irritability | 20% | |||
No effect | 15% | 10% | ||