Insurance, Home Therapy, and Prophylaxis in U.S. Youth with Severe Hemophilia

Baker, Jean H.; Riske, Brenda; Voutsis, Mariam; Cutter, Susan; Presley, Rodney

doi:10.1016/j.amepre.2011.09.002

Cited by 23 publications

(22 citation statements)

References 51 publications

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“…Previous research has consistently shown that being able to manage the child's treatment at home is essential to reduce the impact of the illness for both the child and the parent (Baker, Riske, Voutsis, Cutter, & Presley, ; Myrin Westesson et al, ; Myrin Westesson et al, ; Myrin Westesson et al, ; Stoffman et al, ; von der Lippe et al, ). Somewhat surprisingly, the findings revealed that when a family member administered the clotting factor to the child, the parental perceived burden was higher when compared to if a HCP administered the clotting factor.…”

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

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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: 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

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“…This suggested the influence of medical insurances and reimbursement policy played an important role in patients with prophylaxis, which had also been observed in the United States, though to a different scale. 25 Thus, although the management of haemophilia in China has undergone inspiring changes with some detectable achievements over the last decade, the joint bleeding in the study cohort was still very high, suggesting the poor affordability of clotting factor concentrates was the major challenge. Inability to afford continuous prophylaxis at least twice weekly for more than 12 weeks by some patients was precisely the reason why there were no eligible patients from Centre 1 in 2011 and 2013 ( Figure 3).…”

Section: Discussionmentioning

confidence: 99%

Influence of medical insurance schemes and charity assistance projects on regular prophylaxis treatment of the boys with severe haemophilia A in China

Zhao

et al. 2017

Haemophilia

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“…Home therapy was accepted as standard of care for all ages. 32,33 Prophylactic clotting factor replacement was recommended as the standard of care for children in the US, although widespread adoption of primary prophylaxis was slow during the time this group of men were children. …”

Section: Era D 1982-1993mentioning

confidence: 99%

Men with severe hemophilia in the United States: birth cohort analysis of a large national database

Mazepa¹,

Monahan

Baker

et al. 2016

Blood

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Insurance, Home Therapy, and Prophylaxis in U.S. Youth with Severe Hemophilia

Cited by 23 publications

References 51 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

Influence of medical insurance schemes and charity assistance projects on regular prophylaxis treatment of the boys with severe haemophilia A in China

Men with severe hemophilia in the United States: birth cohort analysis of a large national database

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