Social participation of patients with hemophilia in the Netherlands

Abstract

The introduction of replacement therapy in the 1960s has improved medical and social circumstances gradually. The availability of prophylactic treatment has further increased the possibilities of a "normal" life for patients with hemophilia. We examined whether social participation and health-related quality of life (HRQol) of today's hemophilia patients differs from the general male population. There were a total of 721 participants in the Hemophilia in the Netherlands 5 study (HiN-5 study) ages 16 to 64 years. Patients with severe hemophilia participated less in full-time work compared with the general population. Occupational disability was reported by 35% of patients with severe hemophilia between ages 31 and 64 years, compared with 9% in the general population. HRQol of patients with severe hemophilia between ages 31 and 64 years was lower than of the general population. The differences with the general population in HRQol were least pronounced for patients between ages 16 and 30 years. Despite major improvements in treatment during the last decades, patients with hemophilia are still less involved in fulltime paid work and suffer more from occupational disability than men from the general population. After the introduction of prophylactic treatment, the number of patients who are occupationally disabled is

F8 gene mutation type and inhibitor development in patients with severe hemophilia A: systematic review and meta-analysis

“…Over the past decades, severe hemophilia has changed from a debilitating disease to a condition with a good quality of life. 1 Great advances in efficacy and safety of FVIII products and treatment strategies have made this possible. The current standard of care for children is primary prophylaxis-regular FVIII infusions aimed at preventing joint bleeds and joint damage.…”

The Influence of HIV, HCV and Inhibitors on the Quality of Life and Behavior of the Disease in Patients with Haemophilia: An Observational Study

“…The results are, however, very heterogeneous, depending on the size of the sample, the age of patients, the measuring instruments used and the patients' musculoskeletal disorders [17,18]. The comorbidities associated with haemophilia, such as HIV and HCV, should also be taken into account [8,19].…”

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“…Life expectancy remains lower in men with haemophilia compared to the general male population in the UK (adjusted for HIV, HCV infection) [7]. Intra-cranial hemorrhage is the most common cause of death [7] and any bleeding leads to pain, impacts upon joint health and quality of life [8]. The success of prophylactic treatments in preventing bleeds depends upon strict adherence to a regime [9] and as factor is administered intravenously this can be onerous for the patient.…”