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%).