Increased burden on caregivers of having a child with haemophilia complicated by inhibitors

Lindvall, Karin; Mackensen, Sylvia von; Elmståhl, Sölve; Khair, Kate; Stain, Ann Marie; Ljung, Rolf; Berntorp, Erik

doi:10.1002/pbc.24856

Cited by 47 publications

(81 citation statements)

References 16 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…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%

“…However, a few studies have revealed the impact on parental burden. A cross‐sectional, international study using a generic instrument showed that parents of children with inhibitors reported a higher impact of the illness than parents of children without inhibitors (Lindvall et al, ). Lindvall’s et al () results are in line with two studies using an online questionnaire to identify areas of burden among parents of children with haemophilia (DeKoven, Karkare, Kelley, et al, ; DeKoven, Karkare, Lee, et al, ).…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

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

Self Cite

View full text Add to dashboard Cite

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.

show abstract

Section: Discussionsupporting

confidence: 91%

Section: Introductionmentioning

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

Self Cite

View full text Add to dashboard Cite

show abstract

“…Caregivers of children with hemophilia report reduced health‐related quality of life compared with caregivers of healthy children . Women are often the primary caretakers, and mothers of boys with hemophilia (BWH) are usually more involved in daily childcare than fathers and are believed to have higher risk for psychosocial problems .…”

Section: Introductionmentioning

confidence: 99%

Treatment of hemophilia: A qualitative study of mothers’ perspectives

Lippe

Frich

Harris

et al. 2016

Pediatric Blood & Cancer

View full text Add to dashboard Cite

show abstract

“…The consequences of bleeding and the demands of treatment increase the disease burden on patients and their families, leading to reduced quality of life, financial stress, and strained relationships. 3,4 For these reasons, improved management of patients with hemophilia complicated by an inhibitor is an important, timely challenge for the health care community. This chapter reviews current tools for the care of patients with inhibitors, focusing on treatment and prevention of bleeding and inhibitor eradication.…”

Section: Introductionmentioning

confidence: 99%

Toward optimal therapy for inhibitors in hemophilia

Kempton

Meeks

2014

Blood

128

156

View full text Add to dashboard Cite

Treatment of patients with hemophilia A and B has undergone significant advances during the past 2 decades. However, despite these advances, the development of antibodies that inhibit the function of infused clotting factor remains a major challenge and is considered the most significant complication of hemophilia treatment. This chapter reviews current tools available for the care of patients with inhibitors and highlights areas where progress is imminent or strongly needed. For management of bleeding, bypassing agents remain the mainstay of therapy. Recombinant factor VIIa and activated prothrombin complex concentrates are similarly effective in populations of patients with hemophilia and inhibitors; however, individuals may show a better response to one agent over another. Recent studies have shown that prophylaxis with bypassing agents can reduce bleeding episodes by ∼50%-80%. The prophylactic use of bypassing agents is an important tool to reduce morbidity in patients before they undergo immune tolerance induction (ITI) and in those with persistent high titer inhibitors, but cost and lack of convenience remain barriers. Because of the significant burden that inhibitors add to the individual patient and the health care system, inhibitor eradication should be pursued in as many patients as possible. ITI is an effective tool, particularly in patients with severe hemophilia A and good risk profiles, and leads to a return to a normal factor VIII response in ∼60% of patients. However, for the group of patients who fail to respond to ITI or have hemophilia B, new and improved tools are needed.

show abstract

Increased burden on caregivers of having a child with haemophilia complicated by inhibitors

Cited by 47 publications

References 16 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

Treatment of hemophilia: A qualitative study of mothers’ perspectives

Toward optimal therapy for inhibitors in hemophilia

Contact Info

Product

Resources

About