Table 5 Key impacts on HRQOL of patients with example quotes

Emotional well-being (n = 26; 92.9%)

Frustration (n = 18; 64.3%)

“I’m sure it kind of frustrates her because you know, we don’t know exactly what she needs.” (Caregiver of 19-year-old female)

Loss of doing enjoyable activities (n = 16; 57.1%)

“He wanted to work with kids […] being a camp counselor […], but as he declined he had to leave those things as well. So the things that he found throughout his life that he wanted to do, he was unable to because of the cognition decline.” (Caregiver of 39-year-old male)

Anxiety, fear, worry (n = 9; 32.1%)

“I’d be in an airport and I’d be looking around, although the signs, the signs would tell me to go there, I would not necessarily read the signs properly and it would register with me where I’ve actually got to go. And then that’s when most of the anxiety comes in and um, then you’d get more stressed, don’t you? And one thing sort of leads to another and the anxiety.” (55-year-old male patient)

Physical well-being (n = 24; 85.7%)

Susceptible to other health concerns (n = 10; 35.7%)

“She has been losing weight ‘cause she wasn’t able to, taking so long to feed herself, she’d give up.” (Caregiver of 18-year-old female)

Increased risk of dangerous situations (n = 8; 28.6%)

“We’ve taken to locking the, um, the door at home now, you know, in a way that he can’t, he can’t let himself out because he would […] open the front door and go out into the garden and through the gate and, you know, he, he’s got no sense of danger or, or you know getting lost or anything like that.” (Caregiver of 8-year-old male)

Risk of falling (n = 8; 28.6%)

“It plays so much into her ability to move around and often time, um, it results in a fall if she’s not very careful about being able to see where she’s walking or not trip over something.” (Caregiver of 19-year-old female)

Less physically active (n = 7; 25.0%)

“We’ve noticed over the last probably year that he is more sedentary. Um, so he’ll spend quite a bit of time just sitting, um, in his recliner.” (Caregiver of 32-year-old male)

Social well-being (n = 22; 78.6%)

Less social overall (n = 18; 64.3%)

“So he was very social and then had friends and engaged in the end with this goofy little kid and he doesn’t engage with people anymore, so he doesn’t particularly have friends. Um, you know, those other kids miss class and then maybe they talked to him a little bit, but he doesn’t give much back.” (Caregiver of 16-year-old male)

Unable to participate in social activities (n = 12; 42.9%)

“I know that she longs to be able to run and play with her friends, because I can see it in her eyes, and she can’t. So her gross motor skills are at 15 months and her fine motor skills are at 26 months, right now.” (Caregiver of 8-year-old female)