The impact of extended half-life versus conventional factor product on hemophilia caregiver burden

Abstract

IntroductionExtended half-life factor products have reduced annualized bleeding rates in hemophilia patients. The impact of extended half-life versus conventional factor products on hemophilia caregiver burden has not been investigated. This study aimed to evaluate caregiver burden in extended half-life versus conventional factor products for hemophilia A and B.MethodsThis cross-sectional web-based study of caregivers of people with hemophilia A or B was recruited from a panel research company and by word of mouth. Participants completed the Hemophilia Caregiver Impact measure, the PedsQL Family Impact Module (PedsQL), and the Work Productivity and Activity Impairment Questionnaire (WPAI). We also collected demographic, insurance coverage, and medical information related to the hemophilia patient(s). Burden differences were assessed using linear regression and matched cohort analyses.ResultsThe sample (n = 448) included 49 people who were caring for people on extended half-life factor products. Worse caregiver burden was associated with more infusions per week and more bleeds in the past 6 months. Regression analyses suggested that caring for someone who is on a extended half-life factor product is associated with lower emotional impact (β = − 0.11, p < 0.05, Adjusted R2 = 0.06), and shows a trend association with lower practical impact (β = − 0.09, p < 0.10, Adjusted R2 = 0.05). The matched cohort analysis also revealed that people on extended half-life factor product had lower Emotional Impact and Practical Impact scores (t = − 2.95 and − 2.94, respectively, p < 0.05 in both cases). No differences were detected on the PedsQL or the WPAI.ConclusionThe reduced required frequency of factor product infusions of extended half-life factor products appears to reduce the emotional distress and practical burden of caregiving. Future work should evaluate the longitudinal impact.

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

“…We have shown in our study that bleeding impacts on caregivers' burden, causing emotional stress, changed perception of the child and the need for more medical management. This concurs with a recent study by Schwartz et al, 28 who demonstrated an association between caregiver burden and number of bleeds in the past 6 months.…”

“…We have shown in our study that bleeding impacts on caregivers’ burden, causing emotional stress, changed perception of the child and the need for more medical management. This concurs with a recent study by Schwartz et al, who demonstrated an association between caregiver burden and number of bleeds in the past 6 months. Tackling bleed management, particularly if this requires hospital visits, is known to be difficult for parents, who describe loss of control and additional stress .…”

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

“…Caregivers who spent more time travelling to the HTC and needed more time to infuse their child per month reported greater caregiver burden, and this was in line with data from caregivers in the United States . Schwartz et al described in another US study of haemophilia caregivers worse social, physical, emotional, financial and life style impact as well as overall burden related to number of infusions per week. Little et al describe how living nearer to treatment centres reduced parental stress and improved treatment satisfaction, well‐being and ability to work full‐time.…”

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

“…Furthermore, the parents may have reduced working hours, high out-of-pocket healthcare expenses and difficulties with childcare. Haemophilia might have likewise psychosocial effects on the parents (von der Lippe, Frich, Harris, & Nyheim Solbraekke, 2017; Saxena, 2013;Schwartz et al, 2018). Previous qualitative studies on parents of children with haemophilia revealed that parents experience feelings of guilt, anxiety, despair, vulnerability and powerlessness (Furmedge, Lima, Monagle, Barnes, & Newall, 2013;Myrin Westesson, Baghaei, & Friberg, 2013;Myrin Westesson, Sparud-Lundin, Wallengren, & Baghaei, 2015;Myrin Westesson et al, 2018).…”

“…Haemophilia is a rare but serious chronic bleeding disorder, and when a child is diagnosed with severe or moderate haemophilia, the whole family becomes affected by the illness (Myrin Westesson, Wallengren, Baghaei, & Sparud-Lundin, 2018;Saxena, 2013;Schwartz, Powell, Su, Zhang, & Eldar-Lissai, 2018). Prophylactic treatment with clotting factor is the standard treatment for children with severe haemophilia in high-income countries (Bertamino, Riccardi, Banov, Svahn, & Molinari, 2017).…”