Table 2.
Impacts of cholestatic pruritus in patients with ALGS
| Impact, n (%) | Patient (N = 12) | Caregiver (N = 20)a | Total (N = 32) |
|---|---|---|---|
| Impacts on skin | |||
| Skin damage | 9 (75.0) | 16 (80.0) | 25 (78.1) |
| Skin damage (spontaneous) | 7 (58.3) | 15 (75.0) | 22 (68.8) |
| Skin damage (probed) | 2 (16.7) | 1 (5.0) | 3 (9.4) |
| Blood from scratching | 3 (25.0) | 8 (40.0) | 11 (34.4) |
| Blood from scratching (spontaneous) | 1 (8.3) | 8 (40.0) | 9 (28.1) |
| Blood from scratching (probed) | 2 (16.7) | 0 | 2 (6.3) |
| Impacts on sleep | |||
| Difficulty staying asleep | 3 (25.0) | 16 (80.0) | 19 (59.4) |
| Difficulty staying asleep (spontaneous) | 3 (25.0) | 15 (75.0) | 18 (56.3) |
| Difficulty staying asleep (probed) | 0 | 1 (5.0) | 1 (3.1) |
| Difficulty falling asleep | 6 (50.0) | 11 (55.0) | 17 (53.1) |
| Difficulty falling asleep (spontaneous) | 4 (33.3) | 10 (50.0) | 14 (43.8) |
| Difficulty falling asleep (probed) | 2 (16.7) | 1 (5.0) | 3 (9.4) |
| Impacts on emotions | |||
| Mood changes | 6 (50.0) | 13 (65.0) | 19 (59.4) |
| Low self-esteem | 0 | 2 (10.0) | 2 (6.3) |
| Impacts on daily life | |||
| Inability to concentrate | 4 (33.3) | 8 (40.0) | 12 (37.5) |
| Inability to concentrate (spontaneous) | 4 (33.3) | 7 (35.0) | 11 (34.4) |
| Inability to concentrate (probed) | 0 | 1 (5.0) | 1 (3.1) |
| Feeling tired in school | 1 (8.3) | 1 (5.0) | 2 (6.3) |
| Difficulty participating in sports/playing | 2 (16.7) | 5 (25.0) | 7 (21.9) |
| Social impact | |||
| Unwanted attention from others | 5 (41.7) | 6 (30.0) | 11 (34.4) |
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