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Table 1 Patient and caregiver characteristics

From: Barriers to care in juvenile localized and systemic scleroderma: an exploratory survey study of caregivers’ perspectives

 

Total (n = 69)

Localized (n = 38)

Systemic (n = 31)

N (%/SD)

N (%/SD)

N (%/SD)

On a scale of 0–100 (0 = no impact, 100 = very large impact), how much did the child’s disease have on…

 Child’s life at diagnosis (mean)

59.2 (31.7)

62.1 (33.5)

55.7 (29.5)

 Child’s life currently (mean)

54.4 (27.8)

52.8 (27.7)

56.2 (28.4)

 Family’s life overall (mean)

70.5 (27.2)

68.7 (29.2)

72.7 (24.8)

Mean age of child at diagnosis (years)

8.7 (3.9)

7.9 (3.8)

9.6 (3.6)

Mean age of child currently (years)

12.6 (4.1)

12.2 (4.4)

13.0 (3.6)

Biological sex of child

 Female

55 (79.7%)

29 (76.3%)

26 (83.9%)

 Male

14 (20.3%)

9 (23.7%)

5 (16.1%)

Race/ethnicity of child

 Asian, non-Hispanic

6 (8.7%)

5 (13.2%)

1 (3.2%)

 Black, Hispanic

3 (4.3%)

3 (7.9%)

0

 Black, non-Hispanic

6 (8.7%)

1 (2.6%)

5 (16.1%)

 Native American, Hispanic

1 (1.4%)

1 (2.6%)

0

 White, Hispanic

14 (20.3%)

8 (21.1%)

6 (19.4%)

 White, non-Hispanic

38 (55.1%)

20 (52.6%)

18 (58.1%)

 Prefer not to say

1 (1.4%)

0

1 (3.2%)

Primary language

 English

59 (85.5%)

32 (84.2%)

27 (87.1%)

 Spanish

5 (7.2%)

3 (7.9%)

2 (6.5%)

 Other

5 (7.2%)

3 (7.9%)

2 (6.5%)

Highest level of education in home

 Completed a graduate school program

29 (42.0%)

16 (42.1%)

13 (41.9%)

 Completed College or university

31 (44.9%)

18 (47.4%)

13 (41.9%)

 Completed High School or have a GED

5 (7.2%)

2 (5.3%)

3 (9.7%)

 Completed elementary or middle school

2 (2.9%)

1 (2.6%)

1 (3.2%)

 Prefer not to say

2 (2.9%)

1 (2.6%)

1 (3.2%)

Type of insurance

 Public

15 (21.7%)

6 (15.8%)

9 (29.0%)

 Private

52 (75.4%)

30 (78.9%)

22 (71.0%)

 None

2 (2.9%)

2 (5.3%)

0

Annual household income

 Over $150,000

21 (30.4%)

14 (36.8%)

7 (22.6%)

 $100,000- $150,000

11 (15.9%)

6 (15.8%)

5 (16.1%)

 $75,000- $99,999

7 (10.1%)

4 (10.5%)

3 (9.7%)

 $50,000- $74,999

9 (13.0%)

4 (10.5%)

5 (16.1%)

 $25,000- $49,999

9 (13.0%)

5 (13.2%)

4 (12.9%)

 Less than $25,000

2 (2.9%)

1 (2.6%)

1 (3.2%)

 Unknown or prefer not to say

10 (14.5%)

4 (10.5%)

6 (19.4%)

US census regions

 Northeast

19 (27.5%)

12 (31.6%)

7 (22.6%)

 Midwest

11 (15.9%)

6 (15.8%)

5 (16.1%)

 South

19 (27.5%)

12 (31.6%)

7 (22.6%)

 West

10 (14.5%)

5 (13.2%)

5 (16.1%)

 Outside of US

10 (14.5%)

3 (7.9%)

7 (22.6%)

Time to travel to doctor

 Greater than 5 h

5 (7.2%)

3 (7.9%)

2 (6.5%)

 4- 5 h

3 (4.3%)

2 (5.3%)

1 (3.2%)

 3- 4 h

1 (1.4%)

1 (2.6%)

0

 2- 3 h

3 (4.3%)

3 (7.9%)

0

 1- 2 h

18 (26.1%)

9 (23.7%)

9 (29.0%)

 Less than 1 h

39 (56.5%)

20 (52.6%)

19 (61.3%)