Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2018 May;27(5):1335-1345.
doi: 10.1007/s11136-018-1792-9. Epub 2018 Feb 1.

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

Carolyn E Schwartz  1   2 , Victoria E Powell  3 , Jun Su  4 , Jie Zhang  3 , Adi Eldar-Lissai  5
Affiliations

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

Carolyn E Schwartz et al. Qual Life Res. 2018 May.

Abstract

Introduction: Extended 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.

Methods: This 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.

Results: The 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.

Conclusion: The 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.

Keywords: Burden; Caregiver; Extended half-life factor product; Hemophilia; Hemophilia Caregiver impact measure; Impact.

PubMed Disclaimer

Conflict of interest statement

The authors declare that they have no conflict of interest. Dr. Su was an employee and a shareholder of Biogen and is an employee and a shareholder of Bioverativ. Dr. Eldar-Lissai was an employee and a shareholder of Biogen at the time the study was conducted.

Figures

Fig. 1
Fig. 1
Radar plot showing unadjusted HCI means for extended half-life versus conventional factor product caregivers
See this image and copyright information in PMC

References

    1. Hemophilia Facts. (2016). http://www.cdc.gov/ncbddd/hemophilia/facts.html.
    1. Stedman TL. Stedman’s medical dictionary for the dental professions. Philadelphia: Lippincott Williams & Wilkins; 2006.
    1. Guelcher CJ. Evolution of the treatments for hemophilia. Journal of Infusion Nursing. 2016;39(4):218–224. doi: 10.1097/NAN.0000000000000175. - DOI - PubMed
    1. Mannucci PM, Tuddenham EG. The hemophilias—From royal genes to gene therapy. New England Journal of Medicine. 2001;344(23):1773–1779. doi: 10.1056/NEJM200106073442307. - DOI - PubMed
    1. Franchini M, Mannucci PM. Past, present and future of hemophilia: A narrative review. Orphanet Journal of Rare Diseases. 2012;7(1):1. doi: 10.1186/1750-1172-7-24. - DOI - PMC - PubMed