Table 4.
ALGS study population: caregiver-reported symptoms and impacts of itching by age group (N = 24 caregivers; N = 20 families)
| Concept | Age of child, years | Total (N = 20)a | ||||
|---|---|---|---|---|---|---|
| 0–2 (n = 6) | 3–5 (n = 6) | 6–8 (n = 2) | 9–11 (n = 4) | 12–17 (n = 2) | ||
| Symptom | ||||||
| Itching | 5 | 6 | 3 | 3 | 2 | 19 |
| Impact on child: physical | ||||||
| Skin damage | 5 | 3 | 1 | 4 | 2 | 15 |
| Blood from scratching | 3 | 1 | 1 | 3 | 0 | 8 |
| Physical discomfort | 1 | 1 | 1 | 0 | 0 | 3 |
| Sitting still | 0 | 0 | 1 | 2 | 0 | 3 |
| Pulling out hair | 2 | 0 | 0 | 0 | 0 | 2 |
| Impact on child: sleep | ||||||
| Difficulty staying asleep | 5 | 5 | 1 | 2 | 2 | 15 |
| Difficulty falling asleep | 3 | 2 | 2 | 2 | 1 | 10 |
| Impact on child: activities of daily living | ||||||
| Difficulty participating in sports/playing | 2 | 2 | 0 | 0 | 1 | 5 |
| Inability to concentrate | 1 | 2 | 2 | 1 | 1 | 7 |
| Difficulty with eating | 2 | 0 | 0 | 0 | 0 | 2 |
| Inability to care for self | 0 | 1 | 0 | 0 | 0 | 1 |
| Impact on child: school | ||||||
| Feeling tired in school | 0 | 0 | 0 | 1 | 0 | 1 |
| Impact on child: social | ||||||
| Unwanted attention from others | 0 | 2 | 1 | 1 | 2 | 6 |
| Difficulty/avoiding going out | 1 | 1 | 1 | 0 | 0 | 3 |
| Impact on child: emotional | ||||||
| Mood changes | 5 | 4 | 1 | 2 | 1 | 13 |
| Low self-esteem | 0 | 1 | 0 | 0 | 1 | 2 |
| Attachment to caregiver | 0 | 1 | 0 | 0 | 0 | 1 |
| Lowered confidence | 0 | 0 | 0 | 0 | 1 | 1 |
| Self-pity | 0 | 0 | 0 | 0 | 1 | 1 |
Only spontaneous patient reports are included in the assessment of itching concepts
ALGS Alagille syndrome
aFour families each included two caregivers who reported the same concept; in this case, the concept was counted once to avoid inflation of the results