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Table 1 Characteristics of interview participants (N = 15)

From: A novel patient-reported outcome instrument assessing the symptoms of paroxysmal nocturnal hemoglobinuria, the PNH-SQ

Participant characteristic

Very mild to mild (N = 10)

Moderate (N = 2)

Severe to very severe (N = 3)

Total (N = 15)

Age, years

    

 Mean (SD)

41.5 (11.10)

52.5 (3.54)

40.7 (9.50)

42.8 (10.42)

 Q1

33.0

50.0

31.0

33.0

 Median

41.0

52.5

41.0

41.0

 Q3

47.0

55.0

50.0

50.0

 Min–Max

28–63

50–55

31–50

28–63

Sex, n (%)

    

 Female

5 (50.0)

1 (50.0)

2 (66.7)

8 (53.3)

 Male

5 (50.0)

1 (50.0)

1 (33.3)

7 (46.7)

Race, n (%)

    

 White

10 (100.0)

2 (100.0)

2 (66.7)

14 (93.3)

 Other

0 (0.0)

0 (0.0)

1 (33.3)

1 (6.7)

Ethnicity, n (%)

    

 Hispanic/Latino

0 (0.0)

0 (0.0)

1 (33.3)

1 (6.7)

 Not Hispanic/Latino

10 (100.0)

2 (100.0)

2 (66.7)

14 (93.3)

Education, n (%)

    

 High school diploma (or GED)

0 (0.0)

0 (0.0)

2 (66.7)

2 (13.3)

 Some college or certification program

1 (10.0)

0 (0.0)

0 (0.0)

1 (6.7)

 College or university degree

5 (50.0)

2 (100.0)

1 (33.3)

8 (53.3)

 Graduate degree

4 (40.0)

0 (0.0)

0 (0.0)

4 (26.7)

Employment status, n (%)

    

 Other

0 (0.0)

0 (0.0)

1 (33.3)

1 (6.7)

 Employed full-time

8 (80.0)

0 (0.0)

1 (33.3)

9 (60.0)

 Employed part-time

1 (10.0)

1 (50.0)

0 (0.0)

2 (13.3)

 Homemaker

0 (0.0)

0 (0.0)

1 (33.3)

1 (6.7)

 Retired

1 (10.0%)

1 (50.0%)

0 (0.0%)

2 (13.3%)

Time since diagnosis, years

    

 Mean (SD)

11.6 (9.11)

27.0 (1.41)

10.3 (12.10)

13.4 (10.25)

 Q1

4.0

26.0

1.0

4.0

 Median

10.5

27.0

6.0

12.0

 Q3

18.0

28.0

24.0

24.0

 Min–Max

0–28

26–28

1–24

0–28

Treatment status, n (%)

    

 Unknown

3 (30.0)

0 (0.0)

0 (0.0)

3 (20.0)

 On treatment

3 (30.0)

2 (100.0)

2 (66.7)

7 (46.7)

 Treatment naïve

4 (40.0)

0 (0.0)

1 (33.3)

5 (33.3)

  1. GED general educational development, Q quarter, SD standard deviation