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 |