Eras of the experience of hemophilia disease and care, assigned to men with hemophilia for purposes of the descriptive analysis
. | Birth years . | Description . |
---|---|---|
Era A | Prior to 1958 | The assays required to determine specific diagnosis and degree of deficiency were not available in childhood for most men in this cohort, who were diagnosed based on bleeding severity and nonspecific assays. During early childhood and musculoskeletal development, plasma but not clotting factor replacement was available. Men in this cohort had neither access to specialized HTC clinical care nor home-based therapy during childhood. |
Era B | 1958-1975 | During this transitional era, accurate laboratory diagnosis and treatment with cryoprecipitate or clotting factor VIII concentrate gradually became available during childhood, but only in a limited number of bleeding disorder clinics primarily located in academic, urban hospitals.28 Factor IX concentrates were unavailable during childhood for most in this birth cohort. Congress enacted the law establishing the first HTCs in 1975. |
Era C | 1976-1982 | Accurate laboratory diagnosis and effective plasma-derived hemostatic agents became more widely available beginning in early childhood. Hemostatic agents for individuals with inhibitors were introduced. The innovation of teaching patients/families to administer factor concentrate in the home29-31 for prompt on demand bleeding treatment was increasingly implemented at specialty hemophilia clinics. The number of HTCs grew, primarily in large urban areas. Nevertheless, treatment with factor concentrates resulted in exposure to the HBV and HCV viruses and HIV during this period. |
Era D | 1982-1993 | The men in this cohort had access to virally-inactivated clotting factor concentrates (and subsequently recombinant factor) available throughout most of childhood. Simultaneously, HTCs expanded in number and geographic reach through federally mandated regionalization, and national systems for surveillance of blood safety were established. Therapy was prescribed through the growing system of coordinated regional comprehensive HTCs. Home therapy was accepted as standard of care for all ages.32,33 Prophylactic clotting factor replacement was recommended as the standard of care for children in the US, although widespread adoption of primary prophylaxis was slow during the time this group of men were children. |
. | Birth years . | Description . |
---|---|---|
Era A | Prior to 1958 | The assays required to determine specific diagnosis and degree of deficiency were not available in childhood for most men in this cohort, who were diagnosed based on bleeding severity and nonspecific assays. During early childhood and musculoskeletal development, plasma but not clotting factor replacement was available. Men in this cohort had neither access to specialized HTC clinical care nor home-based therapy during childhood. |
Era B | 1958-1975 | During this transitional era, accurate laboratory diagnosis and treatment with cryoprecipitate or clotting factor VIII concentrate gradually became available during childhood, but only in a limited number of bleeding disorder clinics primarily located in academic, urban hospitals.28 Factor IX concentrates were unavailable during childhood for most in this birth cohort. Congress enacted the law establishing the first HTCs in 1975. |
Era C | 1976-1982 | Accurate laboratory diagnosis and effective plasma-derived hemostatic agents became more widely available beginning in early childhood. Hemostatic agents for individuals with inhibitors were introduced. The innovation of teaching patients/families to administer factor concentrate in the home29-31 for prompt on demand bleeding treatment was increasingly implemented at specialty hemophilia clinics. The number of HTCs grew, primarily in large urban areas. Nevertheless, treatment with factor concentrates resulted in exposure to the HBV and HCV viruses and HIV during this period. |
Era D | 1982-1993 | The men in this cohort had access to virally-inactivated clotting factor concentrates (and subsequently recombinant factor) available throughout most of childhood. Simultaneously, HTCs expanded in number and geographic reach through federally mandated regionalization, and national systems for surveillance of blood safety were established. Therapy was prescribed through the growing system of coordinated regional comprehensive HTCs. Home therapy was accepted as standard of care for all ages.32,33 Prophylactic clotting factor replacement was recommended as the standard of care for children in the US, although widespread adoption of primary prophylaxis was slow during the time this group of men were children. |