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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