Table 8 Changes in impact on family reported by caregivers after the start of the pabinafusp alfa trial
Family impact domains | Specific sub-domain concepts (if applicable) |
|---|---|
Caregiver burden | Improved (n = 2): child more independent and able to complete daily chores, easier to encourage the child to do things (n = 1 each) Worsened (n = 4): difficulty ensuring child swallows properly, help needed with dressing, cannot help when the child is experiencing side effects, difficulty grooming, child requires full support (n = 1 each) |
Social/family impacts | Improved (n = 2): concerns about the child’s safety, family happier and healthier thanks to the child’s better health, family relief at subdued disease progression, the child being back in school, ability to understand the child’s speech (n = 1 each) Worsened: impact on siblings (n = 1) |
Caregiver activities of daily living | Improved (n = 2): completing daily chores, ability to work from home (n = 1 each) |