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Table 5 Information, knowledge and use of support groups

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

  Number of people % of Response
Preferred format for informationa (n = 746)   
 Referred to website 579 77.6
 Social media 419 56.2
 Printed material (e.g., brochures, leaflet) 391 52.4
 Journal article 368 49.3
 Book 257 34.5
 DVD 188 25.2
 Other 67 9.0
Main source of informationa (n = 746)   
 Medical specialist 453 60.7
 Patient organisation 291 39.0
 Other people or families 262 35.1
 Own research 112 15.0
 GP 86 11.5
 Genetic councilor 44 5.9
 Allied health professional 38 5.1
 Other 202 27.1
Now have sufficient knowledge of condition (n = 744)   
 Yes 437 58.7
 No 203 27.3
 Don’t know 104 14.0
Have a specific person to ask questions about condition (n = 737)   
 Yes 438 59.4
 No 299 40.6
Have used a patient support group in past 12 months (n = 620)   
 Daily 62 10.0
 Weekly 47 7.6
 Monthly 53 8.6
 Several times 98 15.8
 Once or twice 72 11.6
 Never 288 46.5
  1. aMultiple responses reported