The impact of psychosocial determinants on caregivers' burden of children with haemophilia (results of the BBC study)

Introduction Caring for a child with haemophilia is burdensome and impacting on caregivers' emotional and financial status. This paper assesses the impact of psychosocial determinants on caregivers' burden across European countries. Methods This non-interventional study enrolled caregiver/child dyads at haemophilia treatment centres (HTCs) using the HEMOphilia associated CAregiver Burden scale (HEMOCAB). Socio-demographic characteristics and clinical data were collected. Results A total of 144 dyads from Germany (n = 19), Italy (n = 19), Netherlands (n = 19), Turkey (n = 20), Sweden (n = 21), UK (n = 21) and Poland (n = 25) participated. Caregivers' mean age was 39.84 +/- 7 (range 24-57); 81.3% were mothers, married (80.4%), living with a partner (86.6%), had a college/university degree (66.5%) and worked (74.2%). Around two thirds of caregivers (66.2%) reported that haemophilia affected their life; 26.8% reported an economic impact; 57.6% reported their child cannot do certain things because of his condition. Caregivers lost an average of 8.35 +/- 14.5 days due to haemophilia. The highest burden was reported in the HEMOCAB domains Perception of Child (37.9 +/- 24.7), Emotional Stress (37.4 +/- 22.6) and Medical Management (33.1 +/- 22.8). Significantly, higher burden was found in caregivers who reported that haemophilia affects their life (P < 0.0001), has an economic impact (P < 0.0001), their child cannot do certain things (P < 0.0001), they spent >= 5 h/mo infusing (P < 0.003) and they needed >= 3 h/mo to reach the HTC (P < 0.0001). Conclusion This snapshot analysis of burden related to caring for a child with haemophilia across Europe revealed the greatest burdens are economic, including days lost from work, and things that a child cannot do, impacting on both child and caregiver.