Impact of haemophilia with inhibitors on caregiver burden in the United States

DeKoven, Mitch; Karkare, Swapna; Lee, W. C.; Kelley, L. A.; Cooper, David L.; Pham, Hoangmai H.; Powers, J.; Wiśniewski, T.

doi:10.1111/hae.12501

Cited by 32 publications

(40 citation statements)

References 26 publications

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“…The strong association between inhibitor development and increased perceived burden for parents of children with haemophilia is not unexpected, and this result is consistent with previous research (DeKoven, Karkare, Kelley, et al, ; DeKoven, Karkare, Lee, et al, ; DeKoven et al, ; Lindvall et al, ; Ljung et al, ). Given this, the HCP must recognise and provide sufficient support to parents of children with inhibitors.…”

Section: Discussionsupporting

confidence: 91%

“…One likely assumption is that parents of children with current inhibitors might report even higher scores of the HEMOCAB. However, children with past inhibitors could have target joints and chronic pain (Rambod, Forsyth, Sharif, & Khair, ; Vulpen, Holstein, & Martinoli, ) which may increase the burden for the parent (DeKoven, Karkare, Lee, et al, ).…”

Section: Discussionmentioning

confidence: 99%

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Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

Westesson

Sparud-Lundin

Baghaei

et al. 2019

Journal of Clinical Nursing

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Aims and objectives To describe the perceived burden on parents of children with severe or moderate haemophilia and the impact of sociodemographic aspects and the child's medical condition on this. Background Parents of children with haemophilia face a multitude of demands. The child needs frequent intravenous injections, hospital visits, extra supervision and care. The child's illness and related management might have psychosocial effects on the parents. Design A multicentre, cross‐sectional study. Methods Caregiver burden was evaluated in 102 parents of children with haemophilia, using the HEMOCAB questionnaire which consists of 54 items divided into 13 domains which are to be answered on a 5‐point Likert scale. To assess the impact of sociodemographic aspects and clinical data on parental burden, linear regression analyses were undertaken. The study followed the STROBE checklist throughout the research process. Results Greater burden was seen in parents of children with past or present inhibitors, in parents of younger children, if a family member administered the clotting factor and in parents of children with overweight/obesity. No significant differences in burden were observed for type of haemophilia, if the child had bleeding in the past 12 months, if the child self‐infused, had another family member with haemophilia or if the parent had more children. Conclusions Parental perceived burden can be negatively affected by the child's medical condition; our results underline that healthcare professionals need to be aware of increased parental burden if the child is young, has or had inhibitors and has overweight/obesity. Relevance to clinical practice More psychosocial support from the healthcare professionals needs to be directed towards parents of younger children and particularly the parents of young children with inhibitors, thus decreasing the parental burden. Parental burden may be reduced if healthcare professionals more actively treat overweight and refer children to appropriate specialists.

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Section: Discussionsupporting

confidence: 91%

Section: Discussionmentioning

confidence: 99%

Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

Westesson

Sparud-Lundin

Baghaei

et al. 2019

Journal of Clinical Nursing

View full text Add to dashboard Cite

show abstract

“…In another study comparing the working situation of caregivers from Sweden, UK and Canada, 46% of caregivers of children with inhibitors worked full‐time compared to 59.5% of caregivers of children with haemophilia and 62.7% of caregivers of healthy children . In the United States, DeKoven et al found comparable data; 36.7% of caregivers of children with inhibitors were able to work full‐time compared to 41.6% of caregivers of children without inhibitors due to haemophilia care responsibilities.…”

Section: Discussionmentioning

confidence: 96%

“…Lindvall et al showed increased burden in parents of children with haemophilia and inhibitors compared to caregivers of children with haemophilia only and caregivers of healthy children. DeKoven et al revealed significantly higher caregiver burden in caregivers of children with inhibitors, mainly in the emotional stress and personal sacrifice domains. Caregivers of children with inhibitors showed higher anxiety and stress scores in the EQ‐5D and reported more activity changes on bleed days compared to non‐bleed days in the US DOSE Study .…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2019

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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.

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“…A study conducted in the USA using an online questionnaire with 6 burden domains (emotional stress, personal sacrifice, financial burden, medical management, child's pain and transportation) and 3 visual analogue scales (VAS) reported significantly higher burden in caregivers caring for children with inhibitors …”

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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Impact of haemophilia with inhibitors on caregiver burden in the United States

Cited by 32 publications

References 26 publications

Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

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

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

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