Table 1

Patient clinical and demographic information

All patients


n

Percentage


Total

589

100%


Demographics


Age (Mean (SD))

47.74 (14.71)


18-24

32

5.4%


25-34

96

16.3%


35-44

122

20.7%


45-54

134

22.8%


55-64

133

22.6%


65-74

51

8.7%


75+

21

3.6%


Race/Ethnicity (multiple response)


White, not of Hispanic origin

521

88.5%


Hispanic

27

4.6%


Black, not of Hispanic origin

23

3.9%


Asian or Pacific Islander

12

2.0%


American Indian/Alaskan Native

8

1.4%


Employment


Employed--Full time

284

48.2%


Employed--Part time

77

13.1%


Self-Employed

38

6.5%


Unemployed

190

32.3%


Patient symptoms and clinical characteristics


Wet Bleeds (Nose or mouth bleeds (in past year))


Not at all

317

53.8%


Once or twice

193

32.8%


Once a month or up to 12 times

54

9.2%


More than once a month

25

4.2%


Dry Bleeds (bruising, hematomas, or petechiae (in past year))


Not at all

122

20.7%


Once or twice

149

25.3%


Once a month or up to 12 times

132

22.4%


More than once a month

186

31.6%


Among the patients, 92% (n = 542) had current or past use of CS, 56% (n = 322) IVIg, 36% (n = 209) anti-D, 36% (n = 213) RT, and 39% (n = 227) SPL. Patients reported current or past experience with a mean 2.58 (SD = 1.17) treatment types among the five alternatives. A mean of 3.12 (SD = 1.83) treatments was reported across all treatments listed, including Danazol (17%), cyclophosphamide (8%), vinca alkaloids (7%), azathioprine (6%), and cyclosporine (4%).

Brown et al. BMC Blood Disorders 2012 12:2   doi:10.1186/1471-2326-12-2

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