Understanding the experience of caring for children with haemophilia: cross-sectional study of caregivers in the United States

• Published in: Haemophilia : the official journal of the World Federation of Hemophilia 2014-07, Vol.20 (4), p.541-549
• Main Authors: DeKoven, M., Karkare, S., Kelley, L. A., Cooper, D. L., Pham, H., Powers, J., Lee, W. C., Wisniewski, T.
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; burden; caregiver; Caregivers - economics; Caregivers - psychology; Caregivers - statistics & numerical data; Child; Child, Preschool; Cross-Sectional Studies; emotional stress; Female; haemophilia; Hemophilia A; Hemophilia B; Humans; Infant; Infant, Newborn; Male; Middle Aged; pain; Parents - psychology; quality of life; Stress, Psychological; Surveys and Questionnaires; Young Adult
• ISSN: 1351-8216; 1365-2516
• DOI: 10.1111/hae.12379

Summary 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 44 years 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.