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Table 1 Frequencies and percentages of coded responses to the open questions concerning the pre-diagnostic interval.

From: The psychological burden of an initially unexplained illness: patients with sternocostoclavicular hyperostosis before and after delayed diagnosis

During the interval before diagnosis, were you able to carry on with your normal work and other activities?

   No

45

86.5%

   Yes

7

13.5%

How did you feel during the interval before diagnosis?

  

   Worried, frightened

25

48.1%

   Depressed, desperate, overwhelmed by disease

12

23.1%

   Misunderstood, not taken seriously, angry

9

17.3%

   Normal, matter of fact

6

11.5%

How did your environment react?

  

   Worried, startled

15

28.9%

   Helpful, empathic, supportive

21

38.5%

   Empathy at first, later less

2

3.9%

   Normal, no empathy, unbelief

10

19.2%

   Patient did not tell environment about disease

4

7.7%

Did your environment support you?

  

   Never

3

5.8%

   Sometimes, little support

5

9.6%

   Gave much support

24

46.2%

   Support only from close family

17

32.7%

   Patient did not need support

3

5.8%

What was the extent of the received support?

  

   No support

6

11.5%

   Little support, sometimes support

13

25.0%

   Much support

33

63.5%

Did others doubt that you were ill?

  

   Never, always taken seriously

23

44.2%

   No doubt in close environment, rest doubted

12

23.1%

   Doubt, did not think complaints were important

13

25.0%

   Patient did not consider herself ill

1

1.9%

   Environment did not know about disease

3

5.8%

Did you yourself sometimes doubt that you were ill?

  

   No

43

82.7%

   Sometimes

9

17.3%

Did others think your complaints were psychological, "all in the mind"?

  

   No

35

67.3%

   Yes, disease was psychological

15

28.8%

   Affectation

2

3.8%

Did you yourself think that your complaints were psychological, "all in the mind"?

  

   No

41

78.8%

   Sometimes

11

21.2%

Did you sometimes feel guilty about your illness?

  

   No

31

59.6%

   Sometimes

3

5.8%

   Often

18

34.6%

Were you sometimes not taken seriously by health-care providers?

  

   No, always taken seriously

17

32.7%

   Yes, by General Practitioner (GP)

13

25.0%

   Yes, by some doctors (GP or specialist)

19

36.5%

   Yes, by hospital staff

3

5.8%

How often were you not taken seriously by health-care providers?

  

   Never

17

32.7%

   Sometimes

27

51.9%

   Often

8

15.4%