Skip to main content

Table 4 Information received at the time of diagnosisa

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

  Number of people % of Response
Understanding of information provided (n = 578)   
 Did not understand all the information 289 50.0
 Understood all the information 289 50.0
Who provided informationb (n = 578)   
 General practitioner 73 12.5
 Medical specialist 486 82.9
 Genetic counsellor 82 14
 Allied health professional 16 2.7
 Other 42 7.2
Format of information provided at diagnosisb (n = 578)   
 Printed material (e.g., brochures, leaflet) 188 32.1
 Referred to website 156 26.6
 Social media 87 14.8
 Journal article 79 13.5
 Verbal onlyc 183 31.2
 Other 9 1.5
  1. aAmong respondents who received information at the time of diagnosis (n = 586)
  2. bMultiple responses reported
  3. cRespondents were not given this option to choose. Instead it was nominated as a response to the option ‘other’