| Title |
The impact of extended half-life versus conventional factor product on hemophilia caregiver burden
|
|---|---|
| Published in |
Quality of Life Research, February 2018
|
| DOI | 10.1007/s11136-018-1792-9 |
| Pubmed ID | |
| Authors |
Carolyn E. Schwartz, Victoria E. Powell, Jun Su, Jie Zhang, Adi Eldar-Lissai |
| Abstract |
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. 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. 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. 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. |
X Demographics
The data shown below were collected from the profiles of 3 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United States | 1 | 33% |
| Unknown | 2 | 67% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 3 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 58 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 58 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 6 | 10% |
| Student > Master | 6 | 10% |
| Professor | 4 | 7% |
| Student > Ph. D. Student | 3 | 5% |
| Other | 3 | 5% |
| Other | 12 | 21% |
| Unknown | 24 | 41% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 8 | 14% |
| Agricultural and Biological Sciences | 5 | 9% |
| Economics, Econometrics and Finance | 4 | 7% |
| Pharmacology, Toxicology and Pharmaceutical Science | 3 | 5% |
| Nursing and Health Professions | 3 | 5% |
| Other | 11 | 19% |
| Unknown | 24 | 41% |
Attention Score in Context
This research output has an Altmetric Attention Score of 2. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 03 May 2018.
All research outputs
#14,374,036
of 23,018,998 outputs
Outputs from Quality of Life Research
#1,521
of 2,915 outputs
Outputs of similar age
#240,285
of 440,103 outputs
Outputs of similar age from Quality of Life Research
#38
of 69 outputs
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