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

Abstract

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.

Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

“…The strong association between inhibitor development and increased perceived burden for parents of children with haemophilia is not unexpected, and this result is consistent with previous research (DeKoven, Karkare, Kelley, et al, ; DeKoven, Karkare, Lee, et al, ; DeKoven et al, ; Lindvall et al, ; Ljung et al, ). Given this, the HCP must recognise and provide sufficient support to parents of children with inhibitors.…”

“…A cross‐sectional, international study using a generic instrument showed that parents of children with inhibitors reported a higher impact of the illness than parents of children without inhibitors (Lindvall et al, ). Lindvall’s et al () results are in line with two studies using an online questionnaire to identify areas of burden among parents of children with haemophilia (DeKoven, Karkare, Kelley, et al, ; DeKoven, Karkare, Lee, et al, ).…”

The impact of psychosocial determinants on caregivers’ burden of children with haemophilia (results of the BBC study)

“…Haemophilia, treatment complications, inhibitors, pain and arthropathy can impact patients psychologically (stress and coping, anxiety and depression, stigmatization and discrimination) and economically . This impacts not only on the health‐related quality of life (HRQoL) of haemophilia patients, but also their caregivers . Khair et al also described that haemophilia has an economic impact on caregivers’ HRQoL.…”

Hemophilia Care in the Pediatric Age

“…When a child is initially diagnosed, shock, denial, anger and depression are common emotional responses of the parents [79] that play a significant role in the care of a child with hemophilia and refers to experiencing a large responsibility for management of hemophilia at home [80]. Parents have to face not only feelings of anxiety, guilt and worry over their child’s condition, but also the impact of pain during infusion [81].…”