title: Increased burden on caregivers of having a child with haemophilia complicated by inhibitors.
abstract: BACKGROUND
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Malmö Centre for Thrombosis and Haemostasis, Skane University Hospital, Lund University, Malmo, Sweden.
authors.forename: Karin
authors.initials: K
authors.lastname: Lindvall
authors.forename: Sylvia
authors.initials: S
authors.lastname: von Mackensen
authors.forename: Sölve
authors.initials: S
authors.lastname: Elmståhl
authors.forename: Kate
authors.initials: K
authors.lastname: Khair
authors.forename: Ann Marie
authors.initials: AM
authors.lastname: Stain
authors.forename: Rolf
authors.initials: R
authors.lastname: Ljung
authors.forename: Erik
authors.initials: E
authors.lastname: Berntorp
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D001007:Anxiety / Q000523:psychology*; D019774:Blood Coagulation Factor Inhibitors / Q000009:adverse effects*; D017028:Caregivers / Q000523:psychology*; D016022:Case-Control Studies; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D003430:Cross-Sectional Studies; D005169:Factor VIII / Q000037:antagonists & inhibitors*; D005260:Female; D005500:Follow-Up Studies; D006304:Health Status; D006467:Hemophilia A / Q000150:complications* / Q000188:drug therapy / Q000523:psychology; D006801:Humans; D007108:Immune Tolerance / Q000187:drug effects; D007223:Infant; D007390:International Agencies; D008297:Male; D008875:Middle Aged; D011379:Prognosis; D011788:Quality of Life; D011795:Surveys and Questionnaires
chemical_list: D019774:Blood Coagulation Factor Inhibitors; D005169:Factor VIII
keywords: caregiver; caregivers' burden scale; haemophilia; health-related quality of life; impact on family scale (IOF); inhibitor