Table 3 Results from the cluster analysis

Age

18–20 years

2 (2.7%)

2 (2.9%)

4 (6.5%)

21–30 years

13 (17.3%)

9 (12.9%)

8 (12.9%)

31–40 years

34 (45.3%)

16 (22.9%)

16 (25.8%)

41–50 years

15 (20%)

30 (42.9%)

26 (41.9%)

51–60 years

10 (13.3%)

10 (14.3%)

6 (9.7%)

61–70 years

1 (1.3%)

3 (4.3%)

2 (3.2%)

Gender

Female

55 (73.3%)

35 (50%)

49 (79%)

Male

20 (26.7%)

35 (50%)

13 (21%)

Age at first symptoms

0–10 years

16 (21.3%)

6 (8.6%)

15 (24.2%)

11–20 years

24 (32%)

16 (22.9%)

15 (24.2%)

21–30 years

24 (32%)

14 (20%)

19 (30.6%)

31–40 years

8 (10.7%)

26 (37.1%)

10 (16.1%)

41–50 years

3 (4%)

8 (11.4%)

2 (3.2%)

51–60 years

0 (0%)

0 (0%)

1 (1.6%)

Years since diagnosis

 < 1 years

5 (6.7%)

16 (22.9%)

8 (12.9%)

1–5 years

19 (25.3%)

25 (35.7%)

18 (29%)

6–10 years

25 (33.3%)

7 (10%)

9 (14.5%)

11–15 years

9 (12%)

9 (12.9%)

10 (16.1%)

16–20 years

10 (13.3%)

5 (7.1%)

6 (9.7%)

21–25 years

2 (2.7%)

2 (2.9%)

6 (9.7%)

 > 25 years

5 (6.7%)

6 (8.6%)

5 (8.1%)

Marital status

Single

21 (28%)

17 (24.3%)

23 (37.1%)

Married

43 (57.3%)

32 (45.7%)

21 (33.9%)

Cohabitant

6 (8%)

12 (17.1%)

9 (14.5%)

Divorced

5 (6.7%)

8 (11.4%)

9 (14.5%)

Widow

0 (0%)

1 (1.4%)

0 (0%)

Education

None

0 (0%)

1 (1.4%)

0 (0%)

Secondary school diploma

8 (10.7%)

13 (18.6%)

12 (19.4%)

High school diploma

32 (42.7%)

41 (58.6%)

36 (58.1%)

Degree

25 (33.3%)

7 (10%)

10 (16.1%)

Post-graduate degree

10 (13.3%)

8 (11.4%)

4 (6.5%)

Working condition

Housewife

4 (5.3%)

3 (4.3%)

4 (6.5%)

Unemployed

7 (9.3%)

10 (14.3%)

7 (11.3%)

Unable to work

3 (4%)

2 (2.9%)

12 (19.4%)

Retired

55 (73.3%)

47 (67.1%)

29 (46.8%)

Student

3 (4%)

3 (4.3%)

3 (4.8%)

Employed

3 (4%)

5 (7.1%)

7 (11.3%)

Quality of life

1-Extremely bad

0 (0%)

1 (1.4%)

11 (17.7%)

2

13 (17.3%)

12 (17.1%)

19 (30.6%)

3

39 (52%)

38 (54.3%)

26 (41.9%)

4

18 (24%)

18 (25.7%)

5 (8.1%)

5-Extremely good

5 (6.7%)

1 (1.4%)

1 (1.6%)

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

1-Not at all

3 (4%)

4 (5.7%)

6 (9.7%)

2

8 (10.7%)

17 (24.3%)

12 (19.4%)

3

18 (24%)

25 (35.7%)

33 (53.2%)

4

32 (42.7%)

13 (18.6%)

7 (11.3%)

5-Completely

14 (18.7%)

11 (15.7%)

4 (6.5%)

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

Never

10 (13.3%)

7 (10%)

4 (6.5%)

Rarely

12 (16%)

11 (15.7%)

5 (8.1%)

Sometimes

24 (32%)

37 (52.9%)

15 (24.2%)

Often

21 (28%)

12 (17.1%)

26 (41.9%)

Always

8 (10.7%)

3 (4.3%)

12 (19.4%)

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

Never

3 (4%)

6 (8.6%)

1 (1.6%)

Rarely

12 (16%)

12 (17.1%)

6 (9.7%)

Sometimes

42 (56%)

26 (37.1%)

10 (16.1%)

Often

12 (16%)

21 (30%)

33 (53.2%)

Always

6 (8%)

5 (7.1%)

12 (19.4%)

Does the rarity of your illness make you feel lonely?

Never

19 (25.3%)

13 (18.6%)

4 (6.5%)

Rarely

24 (32%)

8 (11.4%)

7 (11.3%)

Sometimes

21 (28%)

28 (40%)

12 (19.4%)

Often

9 (12%)

19 (27.1%)

28 (45.2%)

Always

2 (2.7%)

2 (2.9%)

11 (17.7%)

Do you feel understood by the people around you?

Never

2 (2.7%)

5 (7.1%)

7 (11.3%)

Rarely

17 (22.7%)

14 (20%)

15 (24.2%)

Sometimes

23 (30.7%)

21 (30%)

22 (35.5%)

Often

21 (28%)

19 (27.1%)

14 (22.6%)

Always

12 (16%)

11 (15.7%)

4 (6.5%)

Does your illness have economic consequences on your life?

1-Not at all

9 (12%)

12 (17.1%)

2 (3.2%)

2

16 (21.3%)

16 (22.9%)

1 (1.6%)

3

26 (34.7%)

12 (17.1%)

7 (11.3%)

4

11 (14.7%)

17 (24.3%)

22 (35.5%)

5-A lot

13 (17.3%)

13 (18.6%)

30 (48.4%)

Do you have a caregiver?

No

34 (45.3%)

57 (81.4%)

27 (43.5%)

Yes

31 (41.3%)

13 (18.6%)

35 (56.5%)

Do you have the perception that your illness is unpredictable?

Never

0 (0%)

1 (1.4%)

0 (0%)

Rarely

8 (10.7%)

1 (1.4%)

1 (1.6%)

Sometimes

22 (29.3%)

34 (48.6%)

13 (21%)

Often

26 (34.7%)

29 (41.4%)

23 (37.1%)

Always

19 (25.3%)

5 (7.1%)

25 (40.3%)

Is it easy to live with your illness?

Never

7 (9.3%)

6 (8.6%)

25 (40.3%)

Rarely

20 (26.7%)

23 (32.9%)

22 (35.5%)

Sometimes

35 (46.7%)

28 (40%)

12 (19.4%)

Often

11 (14.7%)

12 (17.1%)

3 (4.8%)

Always

2 (2.7%)

1 (1.4%)

0 (0%)

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

Never

29 (38.7%)

39 (55.7%)

34 (54.8%)

Rarely

37 (49.3%)

13 (18.6%)

20 (32.3%)

Often

8 (10.7%)

15 (21.4%)

5 (8.1%)

Always

1 (1.3%)

3 (4.3%)

3 (4.8%)

Has your illness affected the way others see you?

1-Not at all

13 (17.3%)

14 (20%)

2 (3.2%)

2

14 (18.7%)

9 (12.9%)

2 (3.2%)

3

21 (28%)

31 (44.3%)

19 (30.6%)

4

20 (26.7%)

10 (14.3%)

17 (27.4%)

5-Absolutely yes

7 (9.3%)

6 (8.6%)

22 (35.5%)

Do you feel ashamed of your illness?

Never

40 (53.3%)

38 (54.3%)

13 (21%)

Rarely

11 (14.7%)

15 (21.4%)

12 (19.4%)

Sometimes

15 (20%)

14 (20%)

17 (27.4%)

Often

6 (8%)

3 (4.3%)

15 (24.2%)

Always

3 (4%)

0 (0%)

5 (8.1%)

Do you think the disease has changed you?

No

4 (5.3%)

6 (8.6%)

1 (1.6%)

Yes

55 (73.3%)

53 (75.7%)

55 (88.7%)

Not completely

16 (21.3%)

11 (15.7%)

6 (9.7%)

Can you talk openly about your illness?

Never

1 (1.3%)

1 (1.4%)

5 (8.1%)

Rarely

8 (10.7%)

5 (7.1%)

9 (14.5%)

Sometimes

18 (24%)

16 (22.9%)

22 (35.5%)

Often

13 (17.3%)

23 (32.9%)

13 (21%)

Always

35 (46.7%)

25 (35.7%)

13 (21%)

Do you think your illness will get worse over time?

1-Not at all

0 (0%)

4 (5.7%)

0 (0%)

2

7 (9.3%)

5 (7.1%)

3 (4.8%)

3

38 (50.7%)

19 (27.1%)

14 (22.6%)

4

18 (24%)

24 (34.3%)

16 (25.8%)

5-Absolutely yes

12 (16%)

18 (25.7%)

29 (46.8%)

Do you think you have accepted the fact that you have BS?

No

4 (5.3%)

3 (4.3%)

10 (16.1%)

Yes

58 (77.3%)

42 (60%)

20 (32.3%)

Not completely

13 (17.3%)

25 (35.7%)

32 (51.6%)

Has your illness affected your perception of yourself?

1-Not at all

5 (6.7%)

6 (8.6%)

3 (4.8%)

2

12 (16%)

5 (7.1%)

2 (3.2%)

3

21 (28%)

38 (54.3%)

12 (19.4%)

4

21 (28%)

13 (18.6%)

12 (19.4%)

5-Absolutely yes

16 (21.3%)

8 (11.4%)

33 (53.2%)

Do you feel worried about your health?

Never

7 (9.3%)

6 (8.6%)

2 (3.2%)

Rarely

10 (13.3%)

16 (22.9%)

3 (4.8%)

Sometimes

20 (26.7%)

20 (28.6%)

10 (16.1%)

Often

29 (38.7%)

24 (34.3%)

25 (40.3%)

Always

9 (12%)

4 (5.7%)

22 (35.5%)

Do you think you get sick more easily than others?

Never

7 (9.3%)

6 (8.6%)

2 (3.2%)

Rarely

10 (13.3%)

16 (22.9%)

3 (4.8%)

Sometimes

20 (26.7%)

20 (28.6%)

10 (16.1%)

Often

29 (38.7%)

24 (34.3%)

25 (40.3%)

Always

9 (12%)

4 (5.7%)

22 (35.5%)

Has your illness had many effects on your life?

1-Not at all

1 (1.3%)

0 (0%)

0 (0%)

2

2 (2.7%)

8 (11.4%)

0 (0%)

3

21 (28%)

21 (30%)

4 (6.5%)

4

29 (38.7%)

26 (37.1%)

8 (12.9%)

5-Absolutely yes

22 (29.3%)

15 (21.4%)

50 (80.6%)

Are your family members worried about your health?

Never

2 (2.7%)

3 (4.3%)

7 (11.3%)

Rarely

7 (9.3%)

11 (15.7%)

7 (11.3%)

Sometimes

31 (41.3%)

19 (27.1%)

7 (11.3%)

Often

24 (32%)

28 (40%)

23 (37.1%)

Always

11 (14.7%)

9 (12.9%)

18 (29%)

Has your illness had an impact on your family?

1-Not at all

5 (6.7%)

5 (7.1%)

2 (3.2%)

2

13 (17.3%)

13 (18.6%)

3 (4.8%)

3

13 (17.3%)

28 (40%)

8 (12.9%)

4

33 (44%)

12 (17.1%)

10 (16.1%)

5-Absolutely yes

11 (14.7%)

12 (17.1%)

39 (62.9%)

Do you know other people suffering from BS?

No

13 (17.3%)

44 (62.9%)

14 (22.6%)

Yes

62 (82.7%)

26 (37.1%)

48 (77.4%)

Are you aware of the existence of a BS patient association?

No

1 (1.3%)

7 (10%)

2 (3.2%)

Yes

74 (98.7%)

63 (90%)

60 (96.8%)

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

No

16 (21.3%)

49 (70%)

19 (30.6%)

Yes

59 (78.7%)

21 (30%)

43 (69.4%)