| Age, y |
|
|
|
| Mean (SD) |
48.6 (17.0) |
45.3 (12.5) |
49.4 (18.2) |
| Range |
26-83 |
29-59 |
26-83 |
| Gender, n (%) |
|
|
|
| Female |
7 (35) |
3 (75) |
4 (25) |
| Male |
13 (65) |
1 (25) |
12 (75) |
| Current living situation, n (%) |
|
|
|
| Living with partner/spouse |
14 (70) |
1 (25) |
13 (81) |
| Living alone |
2 (10) |
1 (25) |
1 (6) |
| Living with relative(s) |
4 (20) |
2 (50) |
2 (13) |
| Current employment status, n (%) |
|
|
|
| Employed, full-time |
10 (50) |
1 (25) |
9 (56) |
| Employed, part-time |
4 (20) |
2 (50) |
2 (13) |
| Unable to work due to health issues |
1 (5) |
1 (25) |
— |
| Retired |
3 (15) |
— |
3 (19) |
| Other |
2 (10) |
— |
2 (13) |
| Highest level of educational attainment, n (%) |
|
|
|
| Secondary education |
8 (40) |
2 (50) |
6 (38) |
| Degree level or higher |
10 (50) |
2 (50) |
8 (50) |
| Other |
2 (10) |
— |
2 (13) |
| Receiving social security benefit payments, n (%) |
|
|
|
| Yes |
7 (35) |
3 (75) |
4 (25) |
| No |
12 (60) |
— |
12 (75) |
| Prefer not to answer |
1 (5) |
1 (25) |
— |
| Carer or family member relation to individual with XLH, n (%) |
| Parent |
9a (35) |
5b (83) |
4c (20) |
| Child |
2a (8) |
1b (17) |
1c (5) |
| Sibling |
2a (8) |
— |
2c (10) |
| Partner/spouse |
10a (39) |
— |
10c (50) |
| Grandparent |
2a (8) |
— |
2c (10) |
| Father-in-law |
1a (4) |
— |
1c (5) |
| Living in same household with individual with XLH, n (%) |
| Yes |
20a (77) |
5 b (83) |
15c (75) |
| Other family members with XLH diagnosis,d n (%) |
|
|
|
| Mother |
1 (5) |
1 (25) |
|
| Child |
7 (35) |
— |
7 (44) |
| Brother or sister |
1 (5) |
1 (25) |
— |
| Grandmother or grandfather |
1 (5) |
1 (25) |
— |
| Niece or nephew |
2 (10) |
— |
2 (13) |
| Other |
2 (10) |
— |
2 (13) |
| Other illnesses/conditions, n (%) |
|
|
|
| Yes |
8 (40) |
3 (75) |
5 (31) |
| No |
12 (60) |
1 (25) |
11 (69) |