Journal
HAEMOPHILIA
Volume 20, Issue 4, Pages 541-549Publisher
WILEY
DOI: 10.1111/hae.12379
Keywords
burden; caregiver; emotional stress; haemophilia; pain; quality of life
Categories
Funding
- Novo Nordisk Inc, Princeton, New Jersey, USA
- Novo Nordisk
- Baxter Healthcare Corporation
- Bayer Healthcare
- Grifols
- CSL Behring
- Novo Nordisk Inc.
- ASD Healthcare
- Biogen Idec
- Octopharma
- Pfizer
- New England BioLabs
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Congenital haemophilia is an inherited bleeding disorder typically diagnosed at birth or shortly thereafter. Haemophilia imposes a significant burden on patients and their caregivers. The aim of the study was to quantify the overall burden of haemophilia on caregivers in the USA using a novel disease-specific questionnaire and the previously validated CarerQol. Targeted literature review and a previous survey conducted by the authors was used to develop an online questionnaire with six burden domains of interest to caregivers (emotional stress, financial, sacrifice, medical management, child's pain and transportation) and several visual analogue scales (VAS). Content validity of the questionnaire was confirmed by three haemophilia caregivers. The study sample consisted of caregivers of children with haemophilia identified via a previously developed opt-in research database. Descriptive statistics were employed for demographic and clinical characteristics; a generalized linear model (GLM) was used to identify factors influencing caregiver burden. A total of 310 caregivers completed the survey (45.5% response rate). Most of the participating caregivers were mothers of a child with haemophilia (88%), between 35 and 44years of age (48%), and with a college education or a postgraduate degree (63%). Child's pain' was identified as the most burdensome domain to caregivers (median score=3.50 out of 5), followed by emotional stress' (2.67), financial' (2.40), transportation' (2.33), sacrifice' (2.17) and medical management' (2.00) domains. Although higher income exhibited a protective effect, episodes of bleeds, current presence of an inhibitor and lower caregiver productivity in the past month negatively affected caregiver burden per GLM results. Training and educational programs should potentially be developed to address caregiver burden.
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