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Table 1 Baseline Demographic and Clinical Characteristics

From: Psychometric evaluation of a patient-reported outcomes instrument for congenital thrombotic thrombocytopenic purpura

 

Population Sample

(N = 36)

Missing, n

Patients

Sex, n (%)

0

 

 Male

 

12.0 (33.3)

 Female

 

24.0 (66.7)

Age, years

1

 

 Mean (SD)

 

36.3 (13.2)

 Median (range)

 

35.5 (0a–70)

Race, n (%)

0

 

 American Indian or Alaska Native

 

0

 Asian

 

1 (2.8)

 Black or African American

 

1 (2.8)

 Native Hawaiian or other Pacific Islander

 

0

 White

 

34 (94.4)

Employment/educational status, n (%)

0

 

 Employed (full time or part time)

 

23 (3.9)

 School (full time or part time)

 

2 (5.6)

 Unemployed

 

4 (11.1)

 Retired

 

2 (5.6)

 Disabled

 

3 (8.3)

 Other

 

2 (5.6)

Clinician-reported cTTP severity, n (%)

13

 

 Normal

 

0

 Mild

 

13 (56.5)

 Moderate

 

8 (34.8)

 Severe

 

2 (8.7)

Any comorbidities, n (%)

13

 

 No

 

18 (78.3)

 Yes

 

5 (21.7)

Number of comorbidities, n (%)

13

 

 0

 

18 (78.3)

 1

 

3 (13.0)

 2

 

1 (4.3)

 3

 

0

 4

 

1 (4.3)

cTTP treatment history (treatment was received), n (%)

23

 

 Periodically

 

9 (69.2)

 As needed

 

4 (30.8)

cTTP treatment type, n (%)

0

 

 Fresh frozen plasma

 

16 (44.4)

 Solvent detergent plasma

 

13 (36.1)

 VWF/FVIII concentrate

 

6 (16.7)

 Unknown

 

1 (2.8)

cTTP treatment, n (%)

0

 

 Prophylactic

 

28 (77.8)

 On-demand

 

8 (22.2)

  1. aOne participant incorrectly put current year as birth year resulting in a minimum age of 0 years
  2. cTTP Congenital thrombotic thrombocytopenic purpura, FVIII Factor VIII, SD Standard deviation, VWF von Willebrand factor