K.L. and E.B. designed the study. Sv.M. analysed the data. K.K. and A.M.S. contacted and enrolled study subjects and performed the study in the UK and Canada. K.L., E.B. and Sv.M. wrote the paper. S.E. and R.L. provided critical scientific input and reviewed the paper. All authors reviewed the final version of the paper.
Increased burden on caregivers of having a child with haemophilia complicated by inhibitors
Article first published online: 26 NOV 2013
© 2013 Wiley Periodicals, Inc.
Pediatric Blood & Cancer
Volume 61, Issue 4, pages 706–711, April 2014
How to Cite
Lindvall, K., von Mackensen, S., Elmståhl, S., Khair, K., Stain, A. M., Ljung, R. and Berntorp, E. (2014), Increased burden on caregivers of having a child with haemophilia complicated by inhibitors. Pediatr. Blood Cancer, 61: 706–711. doi: 10.1002/pbc.24856
Conflict of interest: Nothing to declare.
- Issue published online: 6 FEB 2014
- Article first published online: 26 NOV 2013
- Manuscript Accepted: 18 OCT 2013
- Manuscript Received: 24 JUL 2013
- Bayer Health Care, Sweden
- Arosenius Fund and Regional fund (ALF)
- caregivers' burden scale;
- health-related quality of life;
- impact on family scale (IOF);
Having a child with a chronic disease often increases the burden in the family with more hospital visits, treatment administration, and increased worries for the ill child. A cross-sectional, international, multi-centre study in caregivers of children <18 years with haemophilia and inhibitor was performed at Haemophilia Treatment Centres in Sweden, UK, and Canada to evaluate caregivers' burden and their health-related quality of life (HRQoL) compared to that of caregivers of children on prophylaxis without inhibitors and caregivers of healthy children.
Caregivers of children with haemophilia completed several questionnaires (SF-36, Visual Analogue Scale of Interference (VAS), Caregivers' Burden Scale and Impact on Family Scale (IOF). Caregivers of healthy children completed only the SF-36. In addition, socio-demographic data were collected.
In total, 143 caregivers were included in the study. Comparing the two haemophilia groups with caregivers of healthy children revealed significant differences for all SF-34 domains except ‘pain’ and ‘general health’. In Caregivers' Burden Scale, caregivers of children with inhibitors reported higher impact of haemophilia (P < 0.0001) and higher impact on VAS (P < 0.0001) compared to caregivers of children without inhibitors. In IOF, caregivers of children with inhibitors reported significant negative impact of the disease, except for aspect of coping.
Caregivers of children with inhibitors reported higher impact of the disease compared to caregivers of children with no inhibitors. No differences between mothers and fathers in the two groups for SF-36, Caregivers' Burden Scale, VAS and IOF, except for domain pain in SF-36 where mothers reported higher impairments. Pediatr Blood Cancer 2014;61:706–711. © 2013 Wiley Periodicals, Inc.