Table 1 Demographic and clinical characteristics of the sample
Characteristics | N (%) |
|---|---|
Diagnosis | |
 Hemophilia A | 169 (77.5) |
 Hemophilia B | 49 (22.5) |
Gender | |
 Male | 174 (79.5) |
 Female | 24 (11.0) |
Age, mean (sd) | 35.45 (12.3) |
Race/Ethnicity | |
 White/Caucasian | 150 (68.5) |
 Othera | 47 (21.5) |
Marital Status | |
 Never Married | 66 (30.1) |
 Married | 98 (44.7) |
 Otherb | 34 (20.1) |
Education level | |
 Less than high school | 9 (4.1) |
 High school or technical school | 30 (13.7) |
 College degree | 128 (58.4) |
 Masters degree | 17 (7.8) |
 Doctoral degree | 6 (2.7) |
 Professional degree | 8 (3.7) |
Employment Status | |
 Employed/self–employed full time | 103 (47.0) |
 Employed part–time | 23 (10.5) |
 On disability | 16 (7.3) |
 Otherc | 56 (25.6) |
Region of the country | |
 Northeast | 46 (21.0) |
 Midwest | 40 (18.3) |
 South | 54 (24.7) |
 West | 58 (26.5) |
Health Insurance | |
 Public | 61 (27.9) |
 Private | 113 (51.6) |
 Both | 6 (2.7) |
 None | 18 (8.2) |
Symptom Severitye | |
 No symptoms | 31 (14.2) |
 Mild symptoms | 67 (30.6) |
 Moderate symptoms | 61 (27.9) |
 Severe symptoms | 39 (17.8) |
Treatment Regimen | |
 Always received on prophylaxis therapy | 121 (55.3) |
 Received both prophylaxis and on-demand therapy | 31 (14.2) |
 Always received on on-demand therapy | 45 (20.5) |
Number of bleeding episodes in the past year, mean (sd) | 11.69 (19.1) |
Hemophilia-related surgery | |
 Yes | 73 (33.3) |
 No | 124 (56.6) |
Comorbidities | |
 Hepatitis C | 80 (36.5) |
 HIVd | 26 (11.9) |
 Depression | 84 (38.4) |
 Inhibitors to clotting factor | 41 (18.7) |
Annual number of hemophilia-related visits, mean (sd) | |
 Hemophilia Treatment Center (HTC) | 2.23 (3.1) |
 Hematologist outside a HTC | 0.83 (1.8) |
 Primary Care Practitioner | 2.42 (4.2) |