Caring for a person with a chronic disease, including haemophilia, can be quite challenging and might have an impact on caregivers’ financial situation, his/her wellbeing, and his/her health status. Data describing the burden among caregivers of children and young PWH are limited. Some data are available from generic instruments assessing the impact of a chronic disease on caregivers of people with haemophilia. But in order to get a deeper insight into the problems and needs specific to caregivers of children with haemophilia, a disease-specific assessment of caregivers’ burden is necessary.
In order to get a deeper insight into the problems and needs specific to caregivers of children and young people with haemophilia, a disease-specific assessment of caregivers’ burden is necessary.
With funding support from Baxalta, Haemnet is coordinating a multinational study entitled “The Burden of Bleeds and Other Determinants on Caregivers of Children and Young Adults with Haemophilia”.
The BBC study will evaluate the impact of bleeding on caregivers of children and young people with haemophilia using a haemophilia-specific scale. In addition, it will:
- Assess what determinants impact on the burden of parents caring for a person with haemophilia stratified by disease severity, treatment modality, presence of inhibitors, orthopaedic joint status, annualized bleeding rate
- Evaluate haemophilia-specific caregiver burden
- Describe socio-demographic aspects of the parents impacting perceived caregiver burden
- Identify differences in caregivers’ burden across countries.