Skip to main content

Table 8 Health service experiences

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

  Number of people % of Response
Number of specialists seen for ongoing care and treatment (n = 730)   
 1–2 447 61.2
 3–4 175 24.0
 5–6 62 8.5
 More than 6 37 5.1
 Don’t know 9 1.2
Designated care coordinator (n = 742)   
 Yes 68 9.2
 No 648 87.4
 Don’t know 26 3.5
Distance travelled to see medical specialists (n = 734)   
 <20 km 242 33.0
 20–50 km 204 27.8
 51–100 km 88 12.0
 101–200 km 68 9.2
 201–500 km 59 8.0
 >500 km 73 9.9
Use telehealth services (n = 741)   
 Yes 29 3.9
 No 697 94.0
 Don’t know 15 2.0
Know of a specialist centre for the condition (n = 738)   
 Yes 163 22.1
 No 378 51.2
 Unsure 197 26.7
Overall satisfaction with adult health services (n = 674)   
 Very satisfied 70 10.4
 Satisfied 179 26.6
 Partly satisfied and partly dissatisfied 255 37.8
 Dissatisfied 84 12.5
 Very dissatisfied 86 12.7
Had ever used paediatric services (n = 746)   
 Yes 115 15.4
 No 606 81.2
 Don’t know 25 3.4
Overall satisfaction with paediatric health servicesa (n = 114)   
 Very satisfied 26 22.8
 Satisfied 39 34.2
 Partly satisfied and partly dissatisfied 37 32.5
 Dissatisfied 6 5.3
 Very dissatisfied 6 5.3
Satisfied with time between last paediatric and first adult visita (n = 103)   
 Yes 51 49.5
 No 26 25.2
 Don’t know 26 25.2
Problems in transition from paediatric to adult servicesa (n = 108)   
 Yes 57 52.8
 No 38 35.2
 Don’t know 13 12.0
  1. aAmong respondents who had ever used paediatric services (n = 115)