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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)