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Increased burden on caregivers of having a child with haemophilia complicated by inhibitors
Author(s) -
Lindvall Karin,
von Mackensen Sylvia,
Elmståhl Sölve,
Khair Kate,
Stain Ann Marie,
Ljung Rolf,
Berntorp Erik
Publication year - 2014
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.24856
Subject(s) - medicine , haemophilia , visual analogue scale , quality of life (healthcare) , disease , family caregivers , disease burden , haemophilia a , coping (psychology) , pediatrics , physical therapy , psychiatry , nursing
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. Methods 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. Results 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. Conclusion 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.