Demographic and clinical characteristics of the patients
| Self-caring adult Sample (n=21) | Patients cared for by a caregiver (children; non-self-caring cognitively impaired adults) Sample (n=15) | Total (n=36) | |
| Demographic variables | |||
| Male, n (%) | 14 (67%) | 9 (60%) | 23 (64%) |
| Female, n (%) | 7 (33%) | 6 (40%) | 13 (36%) |
| Age, mean (SD) | 40.0 (16.0) | 14.1 (9.9) | 29.2 (18.8) |
| Ethnicity | |||
| White British | 9 (43%) | 8 (53%) | 17 (47%) |
| Asian British | 8 (38%) | 7 (47%) | 15 (42%) |
| ‘Other mixed’: mixed Caribbean | 2 (9%) | 0 (0%) | 2 (5%) |
| ‘Other’: Turkish | 1 (5%) | 0 (0%) | 1 (3%) |
| ‘Other’: Arab | 1 (5%) | 0 (0%) | 1 (3%) |
| Clinical variables | |||
| Complementation group | |||
| A | 5 (24%) | 3 (20%) | 8 (22%) |
| C | 6 (29%) | 5 (33%) | 11 (31%) |
| D | 1 (5%) | 4 (27%) | 5 (14%) |
| E | 2 (10%) | 0 (0%) | 2 (6%) |
| F | 1 (5%) | 0 (0%) | 1 (3%) |
| G | 0 (0%) | 2 (13%) | 2 (6%) |
| V | 6 (28.6%) | 0 (0%) | 6 (17%) |
| Unknown | 0 (0%) | 1 (7%) | 1 (3%) |
| Age at diagnosis (years), mean (SD) | 20.4 (15.9) | 4.2 (3.4) | 13.7 (14.7) |
| Age at which started photoprotection (years), mean (SD) | 18.9 (14.0) | 3.7 (3.2) | 12.6 (13.2) |
| Abnormal sunburn reaction (XP sunburn severity score ≥1), n (%)30* | 6 (29%) | 10 (67%) | 16 (44%) |
| Previous skin, eye or oral malignancy, n (%) | 12 (57%) | 2 (13%) | 14 (39%) |
| Cognitive impairment, n (%) | 2 (10%) | 5 (33%) | 7 (19%) |
*Patients with complementation groups A, B, D, F and G have abnormal, increased sunburn reactions. Groups C, E and V are associated with normal visible reactions to sun exposure.
XP, xeroderma pigmentosum.