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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%
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Health and Quality of Life Outcomes

ISSN: 1477-7525

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