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Table 1 Participant Characteristics

From: Patient and caregiver perspectives on guideline adherence: the case of endocrine and bone health recommendations for Duchenne muscular dystrophy

 

Participated in at least 1 round % (n = 95)

Participated in Round 1 (n = 88)

Participated in Round 2 (either viewed or posted) (n = 74)

Participated in Round 3 (n = 56)

Participant Type

 Caregiver

71 (75%)

65 (74%)

58 (78%)

43 (77%)

 Individual with DMD

24 (25%)

23 (26%)

16 (22%)

13 (23%)

Gender

 Female

59 (62%)

53 (60%)

47 (64%)

35 (63%)

 Male

36 (38%)

35 (40%)

27 (36%)

21 (37%)

Hispanic/Latino/Spanisha

 Yes

4 (4%)

2 (2%)

3 (4%)

1 (2%)

 No

90 (96%)

85 (98%)

70 (96%)

54 (98%)

Race

 White

86 (91%)

82 (93%)

67 (91%)

52 (93%)

 Black/African American

1 (1%)

1 (1%)

1 (1%)

0 (0%)

 Asian

4 (4%)

3 (3%)

4 (5%)

4 (7%)

 Multi-race

1 (1%)

0 (0%)

1 (1%)

0 (0%)

 Other

3 (3%)

2 (2%)

1 (1%)

0 (0%)

How far do you usually travel to receive neuromuscular care?a

  < 50 miles

38 (41%)

37 (44%)

30 (41%)

25 (46%)

 50–99 miles

22 (24%)

20 (24%)

16 (22%)

12 (22%)

 100–249 miles

17 (19%)

13 (15%)

14 (19%)

8 (15%)

  ≥ 250 miles

15 (16%)

15 (18%)

13 (18%)

9 (17%)

  1. There were no statistically significant differences between participants and non-participants in different rounds as measured by Fisher’s exact test
  2. a Not all participants provided responses to this question