Table 2 Characteristics of the study population related to disease perception

Is the therapy you are taking keeping your illness under control?

1-Not at all

13

6.28

2

37

17.87

3

76

36.71

4

52

25.12

5-Completely

29

14.01

Do you feel guilty towards people close to you because of your health condition?

Never

21

10.14

Rarely

28

13.53

Sometimes

76

36.71

Often

59

28.5

Always

23

11.11

Have you experienced apprehension, concern or fear for your health?

Never

10

4.83

Rarely

30

14.49

Sometimes

78

37.68

Often

66

31.88

Always

23

11.11

Does the rarity of your illness make you feel lonely?

Never

36

17.39

Rarely

39

18.84

Sometimes

61

29.47

Often

56

27.05

Always

15

7.25

Do you feel understood by the people around you?

Never

14

6.76

Rarely

46

22.22

Sometimes

66

31.88

Often

54

26.09

Always

27

13.04

Does your illness have economic consequences on your life?

1-Not at all

23

11.11

2

33

15.94

3

45

21.74

4

50

24.15

5-A lot

56

27.05

Do you have a caregiver?

No

118

57

Yes

89

43

Do you have the perception that your illness is unpredictable?

Never

1

0.48

Rarely

10

4.83

Sometimes

69

33.33

Often

78

37.68

Always

40

23.67

Is it easy to live with your illness?

Never

38

18.36

Rarely

65

31.4

Sometimes

75

36.23

Often

26

12.56

Always

3

1.45

Do you think you can do something to improve your symptoms?

Never

102

49.28

Sometimes

70

33.82

Often

28

13.53

Always

7

3.38

Has your illness affected the way others see you?

1-Not at all

29

14.01

2

25

12.08

3

71

34.3

4

47

22.71

5-Absolutely yes

35

16.91

Do you feel ashamed of your illness?

Never

91

43.96

Rarely

38

18.36

Sometimes

46

22.22

Often

24

11.59

Always

8

3.86

Do you think the disease has changed you?

No

11

5.31

Yes

163

78.74

Not completely

33

15.94

Can you talk openly about your illness?

Never

7

3.38

Rarely

22

10.63

Sometimes

56

27.05

Often

49

23.67

Always

73

35.27

Do you think your illness will get worse over time?

1-Not at all

4

1.93

2

15

7.25

3

71

34.3

4

58

28.02

5-Absolutely yes

59

28.5

Do you think you have accepted the fact that you have Behçet's disease?

No

17

8.21

Yes

120

57.97

Not completely

70

33.82

Has your illness affected your perception of yourself?

1-Not at all

14

6.76

2

19

9.18

3

71

34.3

4

46

22.22

5-Absolutely yes

57

27.54

Do you feel worried about your health?

Never

5

2.42

Rarely

26

12.56

Sometimes

83

40.1

Often

71

34.3

Always

22

10.63

Do you think you get sick more easily than others?

Never

15

7.25

Rarely

29

14.01

Sometimes

50

24.15

Often

78

37.68

Always

35

16.91

Has your illness had many effects on your life?

1-Not at all

1

0.48

2

10

4.83

3

46

22.22

4

63

30.43

5-Absolutely yes

87

42.03

Are your family members worried about your health?

Never

12

5.8

Rarely

25

12.08

Sometimes

57

27.54

Often

75

36.23

Always

38

18.36

Has your illness had an impact on your family?

1-Not at all

12

5.8

2

29

14.01

3

49

23.67

4

55

26.57

5-Absolutely yes

62

29.95

Do you know other people suffering from Behçet's disease?

No

71

34.3

Yes

136

65.7

Are you aware of the existence of a Behçet's disease patient association?

No

10

4.83

Yes

197

95.17

Are you in contact with or have you used the services of the association?

No

84

40.58

Yes

123

59.42