Table 1.
Summary presentation of demographic and clinical characteristics of the study population by country. PwH with eligible data for ≥1 year in the study period of 2007-2017 and controls as applicable.
| Variable | Denmarka | Finlandb | Norwayc | Swedend |
|---|---|---|---|---|
| PwH, n (person-years) | 886 (6204) | 288 (2911) | 522 (5263) | 1550 (15,806) |
| Control, n (person-years) | 4529 (37,107) | 1411 (14,365) | NA | 8158 (84,310) |
| Demographic information of PwH | ||||
| Men, women, n | 591, 295 | 280, 8 | 446, 76 | 1158, 392 |
| Year of birth | ||||
| Mean (min, max) | 1973 (1911, 2016)e | 1982 (1931, 2015) | 1978 (1919, 2017) | 1975 (1913, 2016) |
| Median (25th, 75th percentile) | 1975 (1952, 1993)e | 1987.5 (1966, 2000) | 1981 (1959, 1998) | 1978 (1956, 1995) |
| Age, mean (SD) in 2012 (mid-year of study period)f | NA | 30.1 (20.3) | 34.7 (21.8) | 36.5 (23.4) |
| Number of years with observations, mean (SD, min, max) | NA | 10.1 (2.1, 2, 11) | 10.1 (2.2, 1, 11) | 10.2 (2.1, 1, 11) |
| Mortality data—PwH vs. controls | ||||
| Deaths during 2007-2017, n (%) | ||||
| PwH | 127 (14.3) | 17 (5.9) | 47 (9.0) | 157 (10.1) |
| Control | 452 (10.0) | 55 (3.9) | NA | 634 (7.8) |
| Age at death, years, mean (min, max) | ||||
| PwH | 76 (11, 101)e | 66 (44, 80) | 64 (3, 97) | 75 (29, 96) |
| Control | 74 (1, 102)e | 58 (1, 85) | NA | 78 (1, 102) |
| Age at death, years, median (25th, 75th percentile) | ||||
| PwH | 77 (68, 86)e | 69 (59, 73) | 67 (55, 78) | 76 (67, 84) |
| Control | 78 (65, 87)e | 65 (49, 72) | NA | 82 (72, 89) |
| Clinical characteristics of PwH | Denmark | Finland | Norway | Sweden |
| Type of bleeding disorder, n (%) | ||||
| Hemophilia A | 776e (79.3) | 226 (78.5) | 421 (80.7) | 1108 (71.5) |
| Hemophilia B | 203e (20.7) | 50 (17.4) | 101 (19.3) | 242 (15.6) |
| No information during the study period | 12g (4.2) | 200h (12.9) | ||
| PwH with ≥1 filled prescription of FVIII or FIX concentrates or bypassing agents during 2007-2017, n | NA | 276 | 318 | 757 |
| Inhibitor, PwH with ≥1 filled prescription of bypassing agents or FVIII or FIX concentrates at volumes of ≥350 IU/kg/week during 2007-2017, n (%) | 51 (5.8) | 23 (8.0) | 23 (4.4) | 90 (5.8) |
FIX, factor IX; FVIII, factor VIII; Max, maximum; Min, minimum; NA, not available/applicable; PwH, people with hemophilia.
Inclusion from national patient registry (NPR; 1995-2017) and hospital pharmacy registry (2007-2017).
Inclusion if entitlement for factor concentrates (2000-2017) or filled prescription of factor concentrates (1995-2017).
Inclusion from Norwegian Prescription Database (NorPD; 2004-2017).
Inclusion from NPR (1987-2017) and prescription registry (2005-2017).
Statistics Denmark reported year of birth, age at death, and type of hemophilia for all PwH selected during 1995-2017 (n = 979, of which 88 were deceased before 2007 and 5 did not have any observation in Danish population registries during 2007-2017; see also Supplementary Figure S1).
Post-hoc analysis. Data not available for Denmark. Number of individuals with data in year 2012. Finland: n = 265; Norway: n = 483; and Sweden: n = 1459.
Finland: n = 12 insufficient information for determining the type of hemophilia in the data during 2007-2017. Eleven of them had an index year before 2007 and had filled prescriptions of desmopressin or tranexamic acid.
Sweden: n = 200 had insufficient information for determining type of hemophilia from the data during 2007-2017 (107 men, 93 women). 179/200 (89.5%) had an index year before 2007. 10 individuals of the 200 had ≥1 filled prescription of desmopressin during 2007-2017.