Table 1 Demographics and characteristics of survey respondents

Participants enrolled, n (%)

71 (100.0)

37 (52.1)

8 (11.3)

17 (23.9)

8 (11.3)

Participant role, n (%)

 Patient

43 (60.6)

18 (48.6)

6 (75.0)

13 (76.5)

5 (62.5)

 Parent/guardian/caregiver

28 (39.4)

19 (51.4)

2 (25.0)

4 (23.5)

3 (37.5)

Age, n (%)

 < 7

11 (15.5)

5 (13.5)

1 (12.5)

3 (17.6)

2 (25.0)

 7–12

8 (11.3)

7 (18.9)

–

1 (5.9)

–

 13–17

7 (9.9)

7 (18.9)

–

–

–

 18–25

10 (14.1)

7 (18.9)

3 (37.5)

–

–

 26–34

14 (19.7)

6 (16.2)

1 (12.5)

5 (29.4)

2 (25.0)

 > 34

21 (29.6)

5 (13.5)

3 (37.5)

8 (47.1)

4 (50.0)

Sex, n (%)

 Male

40 (56.3)

25 (67.6)

4 (50.0)

7 (41.2)

3 (37.5)

 Female

31 (43.7)

12 (32.4)

4 (50.0)

10 (58.8)

5 (62.5)

Geographic region, n (%)

 North America

62 (87.3)

33 (89.2)

7 (87.5)

16 (94.1)

5 (62.5)

 Europe

5 (7.0)

2 (5.4)

1 (12.5)

1 (5.9)

1 (12.5)

 Oceania

2 (2.8)

1 (2.7)

–

–

1 (12.5)

 Asia

1 (1.4)

1 (2.7)

–

–

–

 Africa

1 (1.4)

–

–

–

1 (12.5)

Self-reported severity, n (%)

 Very mild

1 (1.4)

–

–

1 (5.9)

–

 Mild

12 (16.9)

2 (5.4)

3 (37.5)

7 (41.2)

–

 Moderate

22 (31.0)

9 (24.3)

3 (37.5)

6 (35.3)

3 (37.5)

 Severe

24 (33.8)

18 (48.6)

1 (12.5)

3 (17.6)

2 (25.0)

 Very severe

12 (16.9)

8 (21.6)

1 (12.5)

–

3 (37.5)

CBM-use, n (%)

 Currently administering CBM

62 (87.3)

33 (89.2)

6 (75.0)

14 (82.4)

8 (100.0)

 Previously administered CBM

9 (12.7)

4 (10.8)

2 (25.0)

3 (17.6)

–

Age when CBM started, median (IQR)

19 (14.0–26.0)

16 (11.8–24.3)

18 (10.0–21.5)

25 (12.5–38.0)

25.5 (21.8–44.5)

Monthly costs in USD, median (IQR) (n = 49)

$75.00 ($66.84–$150)

$117.33 ($75.00–$150.00)

$112.50 ($33.42–$150.00)

$75.00 ($27.15–$150.00)

$75.00 ($25.00–$91.93)