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

Occupational integration of adults with severe haemophilia (INTHEMO): A study based on the FranceCoag registry

“…The employment rate of PwSH was lower compared to the general population after adjusting for the different age distributions. This outcome is consistent with the findings of previous studies on PwH in Europe 8,21 . Hartl et al.…”

Occupational integration of adults with severe haemophilia (INTHEMO): A study based on the FranceCoag registry

“…The employment rate of PwSH was lower compared to the general population after adjusting for the different age distributions. This outcome is consistent with the findings of previous studies on PwH in Europe 8,21 . Hartl et al.…”

The impact of social factors on outcomes in patients with bleeding disorders

“…Previously published reports showed that patients with haemophilia and bleeding disorders had a reduced HRQoL compared to a normal population mainly in the dimensions ‘physical functioning’, ‘physical role’ and ‘bodily pain’ , which is consistent with the data reported in our study. Patients who were working showed a better joint status than patients who were not working.…”

Social participation is reduced in type 3 Von Willebrand disease patients and in patients with a severe bleeding phenotype

“…Our results suggest that type 3 VWD and a more severe bleeding phenotype in type 1 and type 2 VWD are associated with less social participation, since total BS and bleeding requiring treatment in the year preceding inclusion remained significantly associated with less social participation, even after excluding type 3 VWD patients. In line with our findings, a similar study in haemophilia patients in the Netherlands found that the percentage of completely occupationally disabled patients was 26% for severe haemophilia and 16% for moderate haemophilia, but only 1% for mild hemophilia 9 . Furthermore, we found that a significantly higher proportion of patients who ever experienced joint bleeds requiring treatment reported occupational disability compared to patients who never experienced joint bleeds requiring treatment.…”

Occupational integration of adults with severe haemophilia (INTHEMO): A study based on the FranceCoag registry

“…The employment rate of PwSH was lower compared to the general population after adjusting for the different age distributions. This outcome is consistent with the findings of previous studies on PwH in Europe 8,21 . Hartl et al.…”

The impact of social factors on outcomes in patients with bleeding disorders

“…Previously published reports showed that patients with haemophilia and bleeding disorders had a reduced HRQoL compared to a normal population mainly in the dimensions ‘physical functioning’, ‘physical role’ and ‘bodily pain’ , which is consistent with the data reported in our study. Patients who were working showed a better joint status than patients who were not working.…”

Social participation is reduced in type 3 Von Willebrand disease patients and in patients with a severe bleeding phenotype

“…Our results suggest that type 3 VWD and a more severe bleeding phenotype in type 1 and type 2 VWD are associated with less social participation, since total BS and bleeding requiring treatment in the year preceding inclusion remained significantly associated with less social participation, even after excluding type 3 VWD patients. In line with our findings, a similar study in haemophilia patients in the Netherlands found that the percentage of completely occupationally disabled patients was 26% for severe haemophilia and 16% for moderate haemophilia, but only 1% for mild hemophilia 9 . Furthermore, we found that a significantly higher proportion of patients who ever experienced joint bleeds requiring treatment reported occupational disability compared to patients who never experienced joint bleeds requiring treatment.…”

Occupational integration of adults with severe haemophilia (INTHEMO): A study based on the FranceCoag registry

“…The employment rate of PwSH was lower compared to the general population after adjusting for the different age distributions. This outcome is consistent with the findings of previous studies on PwH in Europe 8,21 . Hartl et al.…”

The impact of social factors on outcomes in patients with bleeding disorders

“…Previously published reports showed that patients with haemophilia and bleeding disorders had a reduced HRQoL compared to a normal population mainly in the dimensions ‘physical functioning’, ‘physical role’ and ‘bodily pain’ , which is consistent with the data reported in our study. Patients who were working showed a better joint status than patients who were not working.…”

Social participation is reduced in type 3 Von Willebrand disease patients and in patients with a severe bleeding phenotype

“…Our results suggest that type 3 VWD and a more severe bleeding phenotype in type 1 and type 2 VWD are associated with less social participation, since total BS and bleeding requiring treatment in the year preceding inclusion remained significantly associated with less social participation, even after excluding type 3 VWD patients. In line with our findings, a similar study in haemophilia patients in the Netherlands found that the percentage of completely occupationally disabled patients was 26% for severe haemophilia and 16% for moderate haemophilia, but only 1% for mild hemophilia 9 . Furthermore, we found that a significantly higher proportion of patients who ever experienced joint bleeds requiring treatment reported occupational disability compared to patients who never experienced joint bleeds requiring treatment.…”