Cargando…
The impact of extended half-life versus conventional factor product on hemophilia caregiver burden
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 hal...
Autores principales: | , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer International Publishing
2018
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5891570/ https://www.ncbi.nlm.nih.gov/pubmed/29392598 http://dx.doi.org/10.1007/s11136-018-1792-9 |
_version_ | 1783313021500653568 |
---|---|
author | Schwartz, Carolyn E. Powell, Victoria E. Su, Jun Zhang, Jie Eldar-Lissai, Adi |
author_facet | Schwartz, Carolyn E. Powell, Victoria E. Su, Jun Zhang, Jie Eldar-Lissai, Adi |
author_sort | Schwartz, Carolyn E. |
collection | PubMed |
description | 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 R(2) = 0.06), and shows a trend association with lower practical impact (β = − 0.09, p < 0.10, Adjusted R(2) = 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. |
format | Online Article Text |
id | pubmed-5891570 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | Springer International Publishing |
record_format | MEDLINE/PubMed |
spelling | pubmed-58915702018-04-17 The impact of extended half-life versus conventional factor product on hemophilia caregiver burden Schwartz, Carolyn E. Powell, Victoria E. Su, Jun Zhang, Jie Eldar-Lissai, Adi Qual Life Res Article 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 R(2) = 0.06), and shows a trend association with lower practical impact (β = − 0.09, p < 0.10, Adjusted R(2) = 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. Springer International Publishing 2018-02-01 2018 /pmc/articles/PMC5891570/ /pubmed/29392598 http://dx.doi.org/10.1007/s11136-018-1792-9 Text en © The Author(s) 2018 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. |
spellingShingle | Article Schwartz, Carolyn E. Powell, Victoria E. Su, Jun Zhang, Jie Eldar-Lissai, Adi The impact of extended half-life versus conventional factor product on hemophilia caregiver burden |
title | The impact of extended half-life versus conventional factor product on hemophilia caregiver burden |
title_full | The impact of extended half-life versus conventional factor product on hemophilia caregiver burden |
title_fullStr | The impact of extended half-life versus conventional factor product on hemophilia caregiver burden |
title_full_unstemmed | The impact of extended half-life versus conventional factor product on hemophilia caregiver burden |
title_short | The impact of extended half-life versus conventional factor product on hemophilia caregiver burden |
title_sort | impact of extended half-life versus conventional factor product on hemophilia caregiver burden |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5891570/ https://www.ncbi.nlm.nih.gov/pubmed/29392598 http://dx.doi.org/10.1007/s11136-018-1792-9 |
work_keys_str_mv | AT schwartzcarolyne theimpactofextendedhalflifeversusconventionalfactorproductonhemophiliacaregiverburden AT powellvictoriae theimpactofextendedhalflifeversusconventionalfactorproductonhemophiliacaregiverburden AT sujun theimpactofextendedhalflifeversusconventionalfactorproductonhemophiliacaregiverburden AT zhangjie theimpactofextendedhalflifeversusconventionalfactorproductonhemophiliacaregiverburden AT eldarlissaiadi theimpactofextendedhalflifeversusconventionalfactorproductonhemophiliacaregiverburden AT schwartzcarolyne impactofextendedhalflifeversusconventionalfactorproductonhemophiliacaregiverburden AT powellvictoriae impactofextendedhalflifeversusconventionalfactorproductonhemophiliacaregiverburden AT sujun impactofextendedhalflifeversusconventionalfactorproductonhemophiliacaregiverburden AT zhangjie impactofextendedhalflifeversusconventionalfactorproductonhemophiliacaregiverburden AT eldarlissaiadi impactofextendedhalflifeversusconventionalfactorproductonhemophiliacaregiverburden |