Table 6 Characteristics of the study sample (overall and in all dsd-LIFE countries)
Variable | Levels | Overall | DE | FR | NL | PL | SE | UK | ||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Total sample | 1040 | 244 | ESS | 274 | ESS | 250 | ESS | 107 | ESS | 122 | ESS | 43 | ESS | |
Diagnosis group | Turner | 301 (28.9) | 43 (17.6) | 116 (42.3) | 82 (32.8) | 3 (2.8) | 46 (37.7) | 11 (25.6) | ||||||
Klinefelter | 218 (21.0) | 38 (15.6) | 26 (9.5) | 88 (35.2) | 23 (21.5) | 35 (28.7) | 8 (18.6) | |||||||
47,XYY | 1 (0.1) | 0 | 0 | 1 (0.4) | 0 | 0 | 0 | |||||||
XY DSD | 222 (21.3) | 57 (23.4) | 42 (15.3) | 46 (18.4) | 54 (50.5) | 18 (14.8) | 5 (11.6) | |||||||
XX gonadal dysgenesis | 21 (2.0) | 4 (1.6) | 10 (3.6) | 1 (0.4) | 2 (1.9) | 4 (3.3) | 0 | |||||||
CAH | 226 (21.7) | 91 (37.3) | 62 (22.6) | 27 (10.8) | 15 (14.0) | 12 (9.8) | 19 (44.2) | |||||||
46,XX male | 6 (0.6) | 3 (1.2) | 0 | 1 (0.4) | 0 | 2 (1.6) | 0 | |||||||
45,X/46,XY + other Y | 45 (4.3) | 8 (3.3) | 18 (6.6) | 4 (1.6) | 10 (9.3) | 5 (4.1) | 0 | |||||||
Age mean (sd) | 32.36 (13.57) | 32.36 (13.46) | 48.70 (18.57) | 25.59 (8.63) | 51.82 (18.48) | 39.37 (14.70) | 51.17 (17.99) | 25.18 (10.13) | 46.10 (18.85) | 38.62 (13.21) | 47.83 (19.01) | 34.79 (11.79) | 51.83 (19.12) | |
Age groups | <= 19 years | 193 (18.6) | 41 (16.8) | 78 (28.5) | 26 (10.4) | 42 (39.3) | 5 (4.1) | 1 (2.3) | ||||||
20–24 years | 185 (17.8) | 47 (19.3) | 68 (24.8) | 28 (11.2) | 22 (20.6) | 14 (11.5) | 6 (14.0) | |||||||
25–44 years | 458 (44.0) | 110 (45.1) | 118(43.1) | 100 (40.0) | 37 (34.6) | 65 (53.3) | 28 (65.1) | |||||||
45–64 years | 178 (17.1) | 40 (16.4) | 10 (3.6) | 84 (33.6) | 5 (4.7) | 32 (26.2) | 7 (16.3) | |||||||
> = 65 years | 26 (2.5) | 6 (2.5) | 0 | 12 (4.8) | 1 (0.9) | 6 (4.9) | 1 (2.3) | |||||||
Gender | Female | 717 (68.9) | 182 (74.6) | 49.6 | 231 (84.3) | 55.2 | 153 (61.2) | 53.6 | 45 (42.1) | 52.1 | 73 (59.8) | 48.7 | 33 (76.7) | 57.4 |
Male | 311 (29.9) | 56 (23.0) | 50.4 | 43 (15.7) | 44.8 | 91 (36.4) | 46.4 | 62 (57.9) | 47.9 | 49 (40.2) | 51.3 | 10 (23.3) | 42.6 | |
Open | 2 (0.2) | 1 (0.4) | 0 | 1 (0.4) | 0 | 0 | 0 | |||||||
Third | 7 (0.7) | 5(2.0) | 0 | 2 | 0 | 0 | 0 | |||||||
Other (“human being”, “varies”, “other”) | 3 (0.3) | 0 | 0 | 3 (1.2) | 0 | 0 | 0 | |||||||
Citizenship n = 991 (95.3%) NA = 49 (4.7%) | G, F, NL, P, S, UK | 970 (97.9) | 226 (9.6) | 96.3 | 250 (98.8) | 96.1 | 230 (99.6) | 98.7 | 106 (99.1) | 100.0 | 119 (100.0) | 97.8 | 39 (92.9) | 97.2 |
Other EU country | 8 (0.8) | 7 (2.9) | 1.3 | 0 | 1.5 | 0 | 0.6 | 0 | 0.0 | 0 | 0.8 | 1 (2.4) | 1.0 | |
Non-EU country | 13 (1.3) | 6 (2.5) | 2.3 | 3 (1.2) | 2.4 | 1 (0.4) | 0.7 | 1 (0.9) | 0.0 | 0 | 1.4 | 2 (4.8) | 1.8 | |
Language spoken at home n = 988 (95.0%) NA = 52 (5.0%) | Same as in home country | 927 (93.6) | 217 (91.2) | 236 (94.0) | 220 (95.2) | 106 (99.1) | 111 (93.3) | 37 (88.1) | ||||||
Not the same | 61 (6.2) | 21 (8.8) | 15 (6.0) | 11 (4.8) | 1 (0.9%) | 8 (6.7) | 5 (11.9) | |||||||
dsd-LIFE country | 17 (27.9) | 6 (28.6) | 2 (13.3) | 6 (54.5) | 0 | 2 (25.0) | 1 (20.0) | |||||||
Other EU country | 11 (18.0) | 2 (9.5) | 2 (13.3) | 2 (18.2) | 0 | 4 (50.0) | 1 (20.0) | |||||||
Non-EU country | 33 (54.1) | 13 (61.9) | 11 (73.3) | 3 (27.3) | 1 (100) | 2 (25.0) | 3 (30.0) | |||||||
Living area n = 992 (95.4%) NA = 48 (4.6%) | A big city | 310 (31.2) | 85 (35.4) | 14.6 | 70 (27.7) | 18.6 | 56 (24.2) | 21.8 | 37 (34.6) | 26.8 | 48 (40.3) | 13.8 | 14 (33.3) | 10.1 |
The suburbs or outskirts of a big city | 189 (19.1) | 30 (12.5) | 14.6 | 54 (21.3) | 12.6 | 33 (14.3) | 7.8 | 5 (4.7) | 3.7 | 55 (46.2) | 26.0 | 12 (28.6) | 20.5 | |
A town or a small city | 258 (26.0) | 63 (26.2) | 40.7 | 74 (29.2) | 31.7 | 61 (26.4) | 25.6 | 40 (37.4) | 30.8 | 6 (5.0) | 31.2 | 14 (33.3) | 48.6 | |
A country village | 198 (20.0) | 53 (22.1) | 27.6 | 40 (15.8) | 31.3 | 77 (33.3) | 41.2 | 21 (19.6) | 37.8 | 6 (5.0) | 18.5 | 1 (2.4) | 17.8 | |
A farm or home in the countryside | 37 (3.7) | 9 (3.8) | 2.5 | 15 (5.9) | 5.8 | 4 (1.7) | 3.6 | 4 (3.7) | 0.9 | 4 (3.4) | 10.5 | 1 (2.4) | 3.0 | |
What is your living situation? n = 986 (94.8%) NA = 54 (5.2%) | Single or separated, living alone | 246 (24.9) | 72 (30.3) | 49 (19.5) | 59 (25.7) | 10 (9.4) | 44 (37.0) | 12 (28.6) | ||||||
Married or in a legally registered civil union, living with a partner | 241 (24.4) | 44 (18.5) | 33 (13.1) | 106 (46.1) | 12 (11.3) | 36 (30.3) | 10 (23.8) | |||||||
Living with a partner without being married or in a civil union | 104 (10.5) | 25 (10.5) | 32 (12.7) | 13 (5.7) | 9 (8.5) | 20 (16.8) | 5 (11.9) | |||||||
Having a partner, but not living with him/her in the same household | 37 (3.8) | 16 (6.7) | 9 (3.6) | 6 (2.6) | 1 (0.9) | 3 (2.5) | 2 (4.8) | |||||||
Living with parent(s) | 321 (32.6) | 72 (30.3) | 121 (48.2) | 37 (16.1) | 66 (62.3) | 13 (10.9) | 12 (28.6) | |||||||
Other | 37 (3.8) | 9 (3.8) | 7 (2.8) | 9 (3.9) | 8 (7.5) | 3 (2.5) | 1 (2.4) | |||||||
People in household mean (sd) n = 980 (94.2%) NA = 60 (5.8%) | 2.62 (1.48) | 2.55 (1.58) | 2.60 (1.32) | 2.89 (1.44) | 2.34 (1.32) | 2.49 (1.51) | 2.33 (1.30) | 3.03 (1.35) | 3.23 (1.53) | 2.15 (1.19) | 2.59 (1.35) | 2.52 (1.57) | 2.38 (1.31) | |
ESISCED n = 984 (94.6%) NA = 56 (5.4%) | 1 | 36 (3.7) | 5 (2.1) | 2.2 | 11 (4.4) | 19.8 | 16 (7.0) | 9.7 | 3 (2.8) | 3.0 | 0 | 9.2 | 1 (2.4) | 24.0 |
2 | 166 (16.9) | 34 (14.3) | 13.0 | 36 (14.3) | 8.8 | 47 (20.6) | 32.5 | 34 (31.8) | 41.0 | 9 (7.6) | 13.7 | 6 (14.6) | 14.0 | |
3 | 167 (17.0) | 61 (25.6) | 40.9 | 30 (12.0) | 24.5 | 48(21.1) | 17.2 | 16 (15.0) | 12.3 | 11 (9.2) | 11.5 | 1 (2.4) | 12.5 | |
4 | 178 (18.1) | 31 (13.0) | 3.9 | 67 (26.7) | 17.8 | 17 (7.5) | 7.3 | 28 (26.2) | 19.2 | 31 (26.1) | 23.0 | 4 (9.8) | 12.8 | |
5 | 108 (11.0) | 35 (14.7) | 18.2 | 25 (10.0) | 13.4 | 17 (7.5) | 8.4 | 2 (1.9) | 4.4 | 22 (18.5) | 19.3 | 7 (17.1) | 14.0 | |
6 | 122 (12.4) | 22 (9.2) | 7.8 | 27 (10.8) | 4.4 | 27 (11.8) | 9.7 | 9 (8.4) | 5.0 | 25 (21.0) | 11.5 | 12 (29.3) | 10.1 | |
7 | 144 (14.6) | 32 (13.4) | 13.1 | 32 (12.7) | 11.2 | 44 (19.3) | 15.2 | 14 (13.1) | 15.1 | 16 (13.4) | 11.3 | 6 (14.6) | 9.4 | |
Other | 63 (6.4) | 18 (7.6) | 0.9 | 23 (9.2) | 0.1 | 12 (5.3) | 0.2 | 1 (0.9) | 0.1 | 5 (4.2) | 0.5 | 4 (9.8) | 3.2 | |
Working situation in the last seven days n = 937 (90.1%) NA = 103 (9.9%) | In paid work (or away temporarily) | 496 (52.9) | 132 (56.4) | 49.1 | 103 (42.0) | 47.0 | 125 (54.6) | 48.9 | 35 (47.9) | 48.3 | 74(63.8) | 54.1 | 27 (67.5) | 45.6 |
In education (not paid for by employer), even if on vacation | 151 (16.1) | 52 (22.2) | 10.0 | 45 (18.4) | 6.2 | 27 (11.8) | 5.3 | 8 (11.0) | 10.1 | 14 (12.1) | 12.0 | 5 (12.5) | 5.0 | |
Unemployed and actively looking for a job | 54 (5.8) | 7 (3.0) | 3.0 | 21 (8.6) | 5.6 | 14 (6.1) | 2.6 | 3 (4.1) | 5.1 | 8 (6.9) | 4.4 | 1 (2.5) | 4.1 | |
Unemployed, wanting a job but not actively looking for a job | 23 (2.5) | 3 (1.3) | 1.3 | 9 (3.7) | 1.3 | 3 (1.3) | 1.3 | 5(6.8) | 1.8 | 2 (1.7) | 0.8 | 1 (2.5) | 1.6 | |
Permanently sick or disabled | 55(5.9) | 4(1.7) | 2.4 | 9(3.7) | 2.9 | 28 (12.2) | 6.1 | 4 (5.5) | 0.8 | 8(6.9) | 3.5 | 2 (5.0) | 4.1 | |
Retired | 33 (3.5) | 15 (6.4) | 24.0 | 1 (0.4) | 32.0 | 10 (4.4) | 23.9 | 0 | 26.6 | 5 (4.3) | 21.6 | 2 (5.0) | 31.8 | |
In community or military service | 2 (0.2) | 0 | 0.0 | 0 | 0.0 | 0 | 0.0 | 2 (2.7) | 0.0 | 0 | 0.1 | 0 | 0.0 | |
Doing housework, looking after children or other persons | 14 (1.5) | 3 (1.3) | 9.3 | 5 (2.0) | 4.1 | 4(1.7) | 10.4 | 1 (1.4) | 6.6 | 0 (0.0) | 2.0 | 1 (2.5) | 6.7 | |
Other | 109 (11.6) | 18 (7.7) | 1.1 | 52(21.2) | 0.9 | 18(7.9) | 1.6 | 15 (20.5) | 0.7 | 5(4.3) | 1.6 | 1(2.5) | 1.0 | |
Working hours per week mean (sd) n = 750 (72.1%) NA = 290 (27.9%) | 33.61 (12.74) | 35.12 (11.61) | 38.94 (15.02) | 31.69 (12.73) | 40.27 (13.40) | 31.87 (12.89) | 34.74 (14.47) | 36.86 (16.17) | 44.81 (12.62) | 34.57 (12.93) | 38.74 (12.46) | 36.91 (9.59) | 36.52 (15.42) | |
Feeling about household income n = 876 (84.2%) NA = 289 (15.8%) | Living comfortably on present income | 339 (38.7) | 96(42.3) | 34.2 | 82(38.1) | 28.4 | 85(40.3) | 47.2 | 5(7.6) | 8.0 | 55(47.4) | 54.4 | 16(39.0) | 37.5 |
Coping with present income | 393(44.9) | 102(44.9) | 51.5 | 83(38.6) | 52.6 | 96(45.5) | 39.8 | 51(77.3) | 60.6 | 46(39.7) | 33.2 | 15(36.6) | 43.7 | |
Finding it difficult to live on present income | 98(11.2) | 24(10.6) | 10.5 | 25(11.6) | 17 | 22(10.4) | 10.1 | 8(12.1) | 27.9 | 11(9.5) | 9.0 | 8(19.5) | 13.7 | |
Finding it very difficult to live on present income | 30(3.4) | 5(2.2) | 3.7 | 12(5.6) | 1.9 | 7(3.3) | 3.0 | 1(1.5) | 3.5 | 3(2.6) | 3.4 | 2(4.9) | 5.0 | |
Other | 16(1.8) | 0(0.0) | 13(6.0) | 1(0.5) | 1(1.5) | 1(0.9) | 0(0.0) | |||||||
Profession n = 948 (91.2%) NA = 92 (8.8%) | Currently not in paid employment | 432(45.6) | 88(36.7) | 138(58.0) | 100(46.3) | 71(66.4) | 29(27.9) | 6(14.0) | ||||||
Professional and technical (for example, doctor, teacher, engineer, artist, accountant) | 160(16.9) | 43(1 .9) | 43 (18.1) | 22 (10.2) | 15 (14.0) | 24 (23.1) | 13 (30.2) | |||||||
Higher administrator (for example, banker, executive in big business, high government official, union official) | 32 (3.4) | 14 (5.8) | 2 (0.8) | 8 (3.7) | 2 (1.9) | 4 (3.8) | 2 (4.7) | |||||||
Clerical (for example, secretary, clerk, office manager, bookkeeper) | 78 (8.2) | 19(7.9) | 11(4.6) | 19(8.8) | 3(2.8) | 19(18.3) | 7(16.3) | |||||||
Sales (for example, sales manager, shop owner, shop assistant, insurance agent) | 30(3.2) | 8(3.3) | 8(3.4) | 5(2.3) | 3(2.8) | 5(4.8) | 1(2.3) | |||||||
Services (for example, restaurant owner, police officer, barber, waitress, caretaker) | 98(10.3) | 33(13.8) | 22(9.2) | 25(11.6) | 0 | 12(11.5) | 6(14.0) | |||||||
Skilled worker (for example, foreman, motor mechanic, printer, seamstress, electrician) | 46(4.9) | 18(7.5) | 1(0.4) | 23(10.6) | 1(0.9) | 1(1.0) | 2(4.7) | |||||||
Semi-skilled worker (for example, bricklayer, bus driver, cannery worker, carpenter, sheet metal worker, baker) | 33(3.5) | 10(4.2) | 4(1.7) | 5(2.3) | 6(5.6) | 6(5.8) | 2(4.7) | |||||||
Unskilled worker (for example, labourer, porter, unskilled factory worker) | 33(3.5) | 7(2.9) | 7(2.9) | 6(2.8) | 6(5.6) | 3(2.9) | 4(9.3) | |||||||
Farm worker (for example, farmer, farm labourer, tractor driver) | 6(0.6) | 0 | 2(0.8) | 3(1.4) | 0 | 1(1.0) | 0 | |||||||
Contact with support group in the last 12 months n = 974 (93.7%) NA = 66 (6.3%) | No | 801(82.2) | 193(80.8) | 237(95.6) | 145(64.7) | 97(93.3) | 99(84.6) | 30(71.4) | ||||||
Yes | 173(17.8) | 46(19.2) | 11(4.4) | 79(35.3) | 7(6.7) | 18(15.4) | 12(28.6) | |||||||
Support through the internet n = 163 (94.2%) NA = 10 (5.8%) | No | 61(37.4) | 20(44.4) | 4(57.1) | 26(34.7) | 1(14.3) | 8(47.1) | 2(16.7) | ||||||
Once | 14(8.6) | 4(8.9) | 0 | 9(12.0) | 0 | 1(5.9) | 0 | |||||||
A few times | 49(3 .1) | 11(24.4) | 3(42.9) | 24(32.0) | 3(42.9) | 5(29.4) | 3(25.0) | |||||||
Often | 39(23.9) | 10(22.2) | 0(0.0) | 16(21.3) | 3(42.9) | 3(17.6) | 7(58.3) | |||||||
Support in face-to-face meetings n = 167 (96.5%) NA = 6 (3.5%) | No | 27(16.2) | 4(8.7) | 2(28.6) | 17(22.1) | 1(14.3) | 1(5.6) | 2(16.7) | ||||||
Once | 40(24.0) | 14(30.4) | 0(0.0) | 19(24.7) | 1(14.3) | 1(5.6) | 5(41.7) | |||||||
A few times | 78(46.7) | 16(34.8) | 5(71.4) | 35(45.5) | 3(42.9) | 14(77.8) | 5(41.7) | |||||||
Often | 22(13.2) | 12(26.1) | 0 | 6(7.8) | 2(28.6) | 2(11.1) | 0 | |||||||