The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)

Abstract

Introduction Treatment burden for the people with haemophilia has been documented, as has the burden of caring for a child with a common chronic disease such as asthma or diabetes. However, there remains a paucity of data about caregiver burden in haemophilia. Aims The aim of this study was to evaluate the impact of bleeding on caregivers of children with haemophilia. Caregiver burden was stratified by the clinical status of their child. Methods A multinational, non‐interventional study of caregivers of children with severe or moderate haemophilia, using the HEMOCABquestionnaire to evaluate caregiver burden. Results A total of 144 caregivers from seven EU countries participated in the study. Differences in caregiver burden were identified based on the clinical situation of the child. Greater burden was seen in caregivers of children who experienced joint bleeding in the preceding 12 months, or had target joints or reduced range of motion in most domains of the HEMOCAB. Caring for a child with a current inhibitor also caused significantly higher burden for caregivers when compared to caring for a child with tolerized inhibitor or without inhibitor. Caregivers of children with chronic pain reported significantly higher burden in all domains of the HEMOCAB except for “interaction with the father.” Conclusion Caregiver burden can be affected by the child's haemophilia status, particularly if joint health is impacted (eg bleeds, decreased mobility) or if the child suffers from chronic pain which was moderately correlated with joint bleeds.

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

“…In the past 12 months, 2.95 ± 4.1 total bleeds (range 0‐28) and 1.13 ± 2.5 (range 0‐20) joint bleeds were reported. For more details, please see Khair et al…”

“…The primary objective of the Burden of Bleeds and Other Clinical Determinants on Caregivers of Children with Haemophilia study (BBC Study) was published elsewhere . The current paper aims to evaluate haemophilia‐specific caregiver burden and to describe psychosocial aspects impacting caregiver burden.…”

Assessing the supportive care needs of parents with a child with a bleeding disorder using the Parental Needs Scale for Rare Diseases (PNS‐RD): A single‐centre pilot study

“…This is higher than in a recently published paper where 26% of parents of children with haemophilia, reported economic impact; including out‐of‐pocket expenses (e.g. costs for special clothing and hospital travel) for their child . For those with the most severe disorders in the UK, state benefits are available to cover additional costs of direct care, repeated hospital visits, transport and other ad hoc expenses.…”

“…It is not uncommon in social research to find fathers more difficult to recruit than mothers . Often, fathers assume that the mothers' opinions may be more relevant, particularly if the research focuses on the impacts of their children's health . Having equal responses from both mothers and fathers on the impacts that their child's bleeding disorder has on the family has enabled a clearer picture of the everyday burdens experienced by parents in this study.…”

Health‐related quality of life and caregiver burden of emicizumab in children with haemophilia A and factor VIII inhibitors—Results from the HAVEN 2 study

“…The burden of caregivers is an important aspect to consider when assessing the management of PwHA. [19][20][21][22][23][24] Emicizumab, a bispecific, humanized, monoclonal antibody, bridges activated FIX and FX, thereby restoring the function of missing activated FVIII in PwHA. 25 It is approved for the prophylaxis of PwHA of all ages both with and without FVIII inhibitors in the United States, EU and other countries worldwide.…”