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Table 1 Sample demographics

From: Factors affecting overall care experience for people living with rare conditions in the UK: exploratory analysis of a quantitative patient experience survey

 

Person with condition answering the survey (n = 833)

Carer describing person they care for (n = 187)

Total

(n = 1020)

Sex

Male

144 (17%)

101 (54%)

245 (24%)

Female

680 (82%)

82 (44%)

762 (75%)

Other

3 (0.4%)

1 (0.5%)

4 (0.4%)

Prefer not to say

4 (0.5%)

1 (0.5%)

5 (0.5%)

Missing

2 (0.2%)

2 (1%)

4 (0.4%)

Age

Under 18

NA

135 (72%)

135 (13%)

18–24

51 (6%)

22 (12%)

73 (7%)

25–34

120 (14%)

11 (6%)

131 (13%)

35–44

159 (19%)

4 (2%)

163 (16%)

45–54

213 (26%)

1 (0.5%)

214 (21%)

55–64

176 (21%)

4 (2%)

180 (18%)

65–74

93 (11%)

6 (3%)

99 (10%)

75 + 

19 (2%)

2 (1%)

21 (2%)

Prefer not to say

2 (0.2%)

0

2 (0.2%)

Missing

0

2 (1%)

2 (0.2%)

Region

North East and Cumbria

35 (4%)

6 (3%)

41 (4%)

North West of England

93 (11%)

18 (10%)

111 (11%)

Yorkshire

64 (8%)

11 (6%)

75 (7%)

East Midlands

54 (6%)

17 (9%)

71 (7%)

West Midlands

45 (5%)

13 (7%)

58 (6%)

East of England

76 (9%)

10 (5%)

86 (8%)

London

71 (9%)

13 (7%)

84 (8%)

South East of England

155 (19%)

45 (24%)

200 (20%)

South West of England

92 (11%)

21 (11%)

113 (11%)

Wales

58 (7%)

10 (5%)

68 (7%)

Northern Ireland

12 (1%)

2 (1%)

14 (1%)

Scotland

73 (9%)

20 (11%)

93 (9%)

Prefer not to say

5 (0.6%)

0

5 (0.5%)

Missing

0

1 (0.5%)

1 (0.1%)