TABLE 2.
Characteristics of itch as reported over the previous 14 days: A comparison between individuals with NF1 and controls
| Characteristics of itch | Adult + child NF1 (n = 63) | Adult NF1 (n = 47) | Child NF1 (n = 16) | Control (n = 12) |
|---|---|---|---|---|
| Frequency | ||||
| None | 1 (2%) | 1 (2%) | 0 | 0 |
| <1/week | 8 (13%) | 6 (13%) | 2 (12) | 4 (33%) |
| Every week | 18 (29%) | 13 (28%) | 5 (31) | 5 (42%) |
| Most days | 24 (38%) | 21 (44%) | 3 (19%) | 2 (17%) |
| Everyday | 12 (19%) | 6 (13%) | 6 (38%) | 1 (8%) |
| Duration | ||||
| <6 h | 46 (73%) | 33 (70%) | 13 (81%) | 11 (92%) |
| 6–12 h | 5 (8%) | 5 (11%) | 0 | 1 (8%) |
| 12–18 h | 4 (6%) | 4 (8%) | 0 | 0 |
| 18–23 h | 1 (2%) | 0 | 1 (6%) | 0 |
| All day | 7 (11%) | 5 (11%) | 2 (13%) | 0 |
| Degree | ||||
| Not present | 3 (%) | 3 (6%) | 0 | 0 |
| Mild | 26 (%) | 18 (38%) | 8 (50%) | 8 (67%) |
| Moderate | 26 (%) | 20 (43%) | 6 (38%) | 4 (33%) |
| Severe | 7 (%) | 5 (11%) | 2 (12%) | 0 |
| Unbearable | 1 (2%) | 1 (2%) | 0 | 0 |
| Direction | ||||
| Gone | 2 (3%) | 1 (2%) | 1 (6%) | 2 (17%) |
| Better still there | 4 (6%) | 3 (6%) | 1 (6%) | 0 |
| A little better | 2 (2%) | 0 | 2 (12.5%) | 0 |
| No change | 50 (79%) | 40 (85%) | 10 (63%) | 9 (75%) |
| Itch worse | 5 (8%) | 3 (6%) | 2 (12.5%) | 1 (8%) |
| Distribution | ||||
| 0–2 body parts | 15 (24%) | 10 (21%) | 5 (31%) | 4 (33%) |
| 3–5 body parts | 23 (37%) | 16 (34%) | 7 (44%) | 6 (50%) |
| 6–10 body parts | 16 (25%) | 12 (26%) | 4 (25%) | 1 (8%) |
| 11–13 body parts | 5 (8%) | 5 (11%) | 0 | 1 (8%) |
| 14–16 body parts | 4 (6%) | 4 (8%) | 0 | 0 |
| Disability impact on sleep | ||||
| Never | 18 (29%) | 14 (30%) | 4 (25%) | 8 (67%) |
| Sometimes falling asleep | 23 (37%) | 17 (36%) | 7 (44%) | 3 (25%) |
| Often falling asleep | 8 (13%) | 5 (11%) | 3 (19%) | 0 |
| Sometimes falling asleep and wakes me | 10 (16%) | 9 (19%) | 1 (6%) | 1 (8%) |
| Often falling asleep and wakes me | 3 (5%) | 2 (4%) | 1 (6%) | 0 |
| Itch location (NFs) | ||||
| On NFs only | 7 (11%) | 6 (12.8%) | 1 (6%) | – |
| On NFs and other areas of the skin | 41 (65%) | 34 (72.3%) | 7 (44%) | – |
| Not on NFs | 15 (23%) | 7 (14.9%) | 8 (50%) | – |
| Itch location (body) | ||||
| All over the body | 30 (48%) | 25 (53.2%) | 5 (31%) | 1 (8%) |
| Certain parts of the body only | 33 (52%) | 22 (48.8%) | 11 (69%) | 11 (92%) |
| Triggers | ||||
| When new NFs appear | 15 (24%) | 12 (26%) | 3 (19%)) | – |
| When NFs grow bigger | 11 (18%) | 8 (17%) | 3 (19%) | – |
| Heat | 36 (57%) | 27 (57%) | 9 (56%) | – |
| Physical activity | 15 (24%) | 10 (21%) | 5 (31%) | – |
| Time of day (e.g., evening) | 15 (24%) | 9 (19%) | 6 (38%) | – |
| During pregnancy (ladies) | 12 (19%) | 11 (23%) | 1 (6%) | – |
| No specific triggers | 27 (43%) | 23 (49%) | 4 (25%) | – |
| Emotions | ||||
| Never affect | 11 (18%) | 8 (17%) | 3 (19%) | 3 (25%) |
| Rarely affects | 14 (22%) | 10 (21%) | 4 (25%) | 6 (50%) |
| Sometimes affects | 23 (37%) | 19 (40%) | 4 (25%) | 2 (17%) |
| Often affects | 10 (16%) | 6 (13%) | 4 (25%) | 1 (8%) |
| Always affects | 5 (8%) | 4 (9%) | 1 (6%) | 0 (0%) |
Note: Itch frequency, duration, degree, direction, distribution as reported over the previous 14 days. 5D itch score calculated from duration, degree, direction, distribution, and disability.