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Table 1 Demographic characteristics of study participants (patients = 91, carers = 55)

From: Understanding the socioeconomic costs of dystrophic epidermolysis bullosa in Europe: a costing and health-related quality of life study

 

France

Germany

Italy

Spain

UK

Total/average

Patients

      

No.

14

4

26

32

15

91

Sex, females %

57.1

100.0

57.7

59.4

66.7

61.5

All patients, average age

      

  Years

24.6

28.8

18.7

21.1

31.5

23.0

  SD

23.3

24.0

10.6

18.0

20.5

18.1

Adults, No.

7

2

15

15

11

50

Adults, %

50.0

50.0

57.7

46.9

73.3

54.9

Adults, average age

      

  Years

42.1

49.0

26.0

38.7

41.3

36.3

Adolescents, No.

7

2

11

17

4

41

Adolescents, %

50.0

50.0

42.3

53.1

26.7

45.1

Adolescents, average age

      

  Years

7.1

8.5

8.8

5.6

4.8

6.8

Disease subtype, %

      

  Dystrophic generalised

57.1

100.0

88.5

81.3

60.0

76.9

  Dystrophic localised

42.9

0.0

11.5

18.8

40.0

23.1

Caregivers (main)

      

No.

5

2

19

23

6

55

Sex, males, %

0.0

0.0

21.1

17.4

16.7

16.4

Sex, females %

100.0

100.0

78.9

82.6

83.3

83.6

Average age

      

  Years

37.5

44.0

38.2

47.2

46.4

43.3

  SD

8.1

12.7

19.3

15.3

11.3

16.1

Relationship to patient, %

      

  Parent

40.0

100.0

26.3

87.0

50.0

58.2

  Other relative

20.0

0.0

57.9

8.7

0.0

25.5

  Partner or other

20.0

0.0

5.3

4.3

33.3

9.1

Employment status, %

      

  Employed

40.0

100.0

31.6

43.5

33.3

40.0

  Retired

0.0

0.0

15.8

21.7

0.0

14.5

  Houseworker

20.0

0.0

26.3

30.4

50.0

29.1

  Other

20.0

0.0

15.8

4.3

0.0

9.1

Average dedication

      

  Hours per week

27.8

108.8

59.6

81.8

73.0

69.0

  SD

37.7

4.5

36.2

32.5

52.3

39.4