ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2018
The impact of extended half-life versus conventional factor product on hemophilia caregiver burden.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
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Who cites it
17 citing papers in PubMed.
- The association of factor VIII activity levels with bleeding and quality of life in haemophilia a: findings from the European CHESS II study.Orphanet journal of rare diseases · 2025Article
- Evaluating the Cost-Effectiveness of Etranacogene Dezaparvovec Gene Therapy for Hemophilia B Treatment in the USA.Applied health economics and health policy · 2025Article
- Development and validation of the Child Hemophilia Treatment Experience Measure: A new observer-reported outcome measure.Haemophilia : the official journal of the World Federation of Hemophilia · 2025Article
- Contemporary approaches to treat people with hemophilia: what's new and what's not?Research and practice in thrombosis and haemostasis · 2025Review
- A time trade-off study in the UK, Canada and the US to estimate utilities associated with the treatment of haemophilia.Health and quality of life outcomes · 2024Article
- Hemophilia Caregiver Burden in a Low Socioeconomic Region of Turkey.Turkish archives of pediatrics · 2023Article
- Post hoc longitudinal assessment of the efficacy and safety of recombinant factor IX Fc fusion protein in hemophilia B.Blood advances · 2023Article
- Health care utilization and expenditures of parents of children with and without hemophilia A.Journal of managed care & specialty pharmacy · 2022Article
- Predicting Individual Changes in Terminal Half-Life After Switching to Extended Half-Life Concentrates in Patients With Severe Hemophilia.HemaSphere · 2022Article
- Interplay of disability, caregiver impact, and out-of-pocket expenditures in Duchenne muscular dystrophy: a cohort study.Journal of patient-reported outcomes · 2022Article
- Preferences and Health-Related Quality-of-Life Related to Disease and Treatment Features for Patients with Hemophilia A in a Canadian General Population Sample.Patient preference and adherence · 2021Article
- A Real-World Analysis of Commonly Prescribed FVIII Products Based on U.S. Medical Charts: Consumption and Bleeding Outcomes in Hemophilia A Patients.Journal of managed care & specialty pharmacy · 2020Article
- Comparing Factor Use and Bleed Rates in U.S. Hemophilia A Patients Receiving Prophylaxis with 3 Different Long-Acting Recombinant Factor VIII Products.Journal of managed care & specialty pharmacy · 2020Article
- Exploring the Impact of Infusion Frequency in Hemophilia A: Exit Interviews with Patients Participating in BAY 94-9027 Extension Studies (PROTECT VIII).The patient · 2019Article
- Longitudinal validity of the hemophilia caregiver impact measure.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2019Article
- Review
- How to discuss gene therapy for haemophilia? A patient and physician perspective.Haemophilia : the official journal of the World Federation of Hemophilia · 2019Review
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
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 R
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.
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