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

Mackensen, Sylvia von; Westesson, Linda Myrin; Kavaklı, Kaan; Klukowska, Anna; Escuriola, Carmen; Uitslager, Nanda; Santoro, Cristina; Holland, Michael; Khair, Kate

doi:10.1111/hae.13684

Cited by 17 publications

(41 citation statements)

References 33 publications

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“…Informal caregivers are often impacted by the emotional and financial burden of caregiving, including days lost from work, reduced number of hours worked or electing not to work at all. In one European study, two‐thirds of caregivers of children, mainly with severe HA, reported that haemophilia affected family life and 27% said haemophilia had an economic impact on the family 50 . Overall, these caregivers lost an average 8.4 days in the past 12 months due to their child's haemophilia.…”

Section: Methodsmentioning

confidence: 99%

The societal burden of haemophilia A. I – A snapshot of haemophilia A in Australia and beyond

Brown

et al. 2020

Haemophilia

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IntroductionFew studies, both in Australia and overseas, have examined the social impacts of living with haemophilia A (HA) or the economic costs associated with the disorder. The purpose of this paper is to examine the epidemiology and societal burden of people with HA (PwHA) in Australia, with a particular focus on men with this disorder.MethodsThe epidemiology and societal burden of HA in Australia, with a particular focus on men with this disorder, were assessed, using data available in the Australian and international literature and publicly available data.ResultsThe mean annual prevalence of HA is approximately 1‐2 per 10 000 males. Prophylactic treatment is used in one‐quarter (25.1%) of people with moderate HA, and 82.2% of people with severe HA. Within the latter group, 16.1% have inhibitors for Factor VIII, predisposing them to worse morbidity, mortality and quality of life when compared to the non‐inhibitor population. Joint pain and joint disease occur commonly in PwHA, with up to 70% of adults with HA experiencing joint problems. HA is associated with poor physical health, and PwHA miss school and work due to bleeding‐related events.ConclusionHA is associated with substantial economic burden; with large differences in costs reported between countries. Overall, HA imposes a significant burden of disease on PwHA, their families and the community at large.

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Section: Methodsmentioning

confidence: 99%

The societal burden of haemophilia A. I – A snapshot of haemophilia A in Australia and beyond

Brown

et al. 2020

Haemophilia

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“…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.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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Introduction: Persons with haemophilia A (PwHA) with factor (F)VIII inhibitors, including children, have impaired health-related quality of life (HRQoL). The HAVEN 2 study (NCT027955767) of paediatric PwHA with FVIII inhibitors demonstrated that subcutaneous emicizumab prophylaxis resulted in low annualizedbleed rates. Aim: We assessed the impact of emicizumab prophylaxis on the HRQoL of children and their caregivers participating in HAVEN 2. Methods: Children aged 8-11 years self-reported HRQoL using the Haemophilia-Specific Quality of Life Assessment Instrument for Children and Adolescents Short Form (Haemo-QoL SF II). Caregivers of children aged 0-11 years completed the Adapted Inhibitor-Specific Quality of Life Assessment with Aspects of Caregiver Burden. All scores were transformed to a 0-100 scale, where lower scores reflect a better HRQoL. The number of missed days from school/day care and hospitalizations was also recorded. Results: In HAVEN 2 (n = 88), the median age was 6.5 years (range: 1-15 years); 85 participants were aged < 12 years and included in this analysis, and 34 participants were aged 8-11 years, thereby eligible to complete the Haemo-QoL SF II questionnaire. The mean (standard deviation, n) baseline Haemo-QoL SF II 'Total' score was 30.2 (14.9, 30), indicating moderate impairment; with emicizumab, mean score decreased by −9.62 (7.73, 17) points to 23.0 (13.93, 20) by Week 49. The most improved domains were 'Sports & School' and 'Physical Health'. Caregivers reported similar improvements. Conclusion: Prophylactic emicizumab is accompanied by substantial and sustained improvements in HRQoL of paediatric PwHA with FVIII inhibitors and their caregivers. K E Y W O R D S caregiver burden, children, emicizumab, haemophilia, health-related quality of life, inhibitors This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

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“…One of the secondary objectives reported in this paper was to assess what clinical determinants impact on the burden of caregivers, stratified by severity, treatment modality, presence of inhibitors, joint health and chronic pain. The other objectives related to the impact of psychosocial determinants on caregiver burden, etc., are reported in a separate paper in this volume …”

Section: Introductionmentioning

confidence: 99%

“…The other objectives related to the impact of psychosocial determinants on caregiver burden, etc., are reported in a separate paper in this volume. 27 Clinical data about the children were collected by the haemophilia centre staff. This included type and severity of haemophilia, inhibitor status (current, ever, never), joint health (bleeding in the last 12 months, reduced range of motion, target joints), treatment regimen, surgery, chronic pain and other concomitant diseases.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2019

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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.

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

Cited by 17 publications

References 33 publications

The societal burden of haemophilia A. I – A snapshot of haemophilia A in Australia and beyond

The societal burden of haemophilia A. I – A snapshot of haemophilia A in Australia and beyond

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

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