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Table 3 Experiences of diagnosis

From: Survey of healthcare experiences of Australian adults living with rare diseases

  Number of people % of Response
Age at diagnosis (n = 732)   
 0–17 years 127 17.4
 18 years or more 605 82.6
Time to diagnosis (n = 718)   
 <3 months 181 25.2
 3–12 months 169 23.5
 1–5 years 153 21.2
 5–10 years 147 20.5
 >20 years 68 9.5
Number of doctors seen to get a confirmed diagnosis (n = 735)   
 1–2 248 33.7
 3–5 275 37.4
 6–10 122 16.6
 11 or more 90 12.2
Incorrect diagnosis (n = 737)   
 At least one incorrect diagnosis 338 45.9
 No incorrect diagnosis 360 48.8
 Unsure 39 5.3
Information on condition received (n = 742)   
 Received no information 141 19.0
 Received some information but not enough 394 53.1
 Received enough information 192 25.9
 Unsure 15 2.0