Caregiver burden in haemophilia: results from a single UK centre

Abstract

Haemophilia caregivers face limitations in their life leading to perceived burden. This single-centre study investigates the impact of burden on caregivers’ health-related quality of life (HRQoL). Methods: Questionnaires for caregivers comprised demographic data, HRQoL (EQ-5D, SF-36) and caregiver burden (IOF: Impact on Family Scale). Children were also asked about their HRQoL (EQ-5D, Haemo-QoL Short Form). Results: 20 consecutive parent/child dyads participated. 80% were mothers (mean age of 39.80±6.2 years) with 1-3 haemophilic children aged 8-17 years and 2.5±1.2 children <18 years living in the household. Mothers did most childcare (80%), 50% worked part-time, and 55% reported that haemophilia had an economic impact on their family. 80% of boys had haemophilia A; 60% were severely affected. Most received home treatment (85%) and prophylaxis (80%). Caregivers’ and boys’ HRQoL was similarly good (EQ-5Dparents M=0.90±0.1 vs. EQ-5Dchild M=0.81±0.3); by contrast, boys reported better values in the EQ-VAS (Mchild=90.25±10.0 vs. Mparents=82.16±14.8). Caregivers reported highest impairments in the dimensions ‘vitality’ (M=60.00±20.5) and ‘emotional role’ (M=70.37±42.6) of the SF-36. In the IOF, caregivers reported highest impairments in the dimension ‘negative impact’ (M=60.08±20.7). Caregivers reporting high burden had significantly worse HRQoL in the domains ‘bodily pain’ (p<.028) and ‘social functioning’ (p<0.024) of the SF-36. Caregivers who reported that haemophilia had an economic impact on their family and those with a chronic disease showed significant higher impairments in caregiver burden and their HRQoL. Conclusions: The perceived burden of haemophilia has a direct impact on caregivers’ HRQoL. Further studies with haemophilia-specific instruments are needed to verify these findings.

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

“…40% of those working part‐time did so because of their child's haemophilia, yet only 26.5% reported that this caused an economic impact. In a single‐centre study in the UK, similar results were found for working part‐time due to the child's haemophilia (50%), and by contrast in the UK study, a higher percentage of caregivers reported an economic impact (55%) related to haemophilia . In another study comparing the working situation of caregivers from Sweden, UK and Canada, 46% of caregivers of children with inhibitors worked full‐time compared to 59.5% of caregivers of children with haemophilia and 62.7% of caregivers of healthy children .…”

“…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.…”

“…Lopez‐Vargas et al suggested “supporting sibling wellbeing, parental resilience and financial loss, alleviating caregiver burden,” as key findings in the psychosocial well‐being of caregivers of children with LTCs. Caregiver burden in haemophilia has been assessed alongside other LTCs using generic instruments such as the Zarit Scale, the Impact on Family Scale and the Caregiver Burden Scale . More recently, haemophilia‐specific instruments have been used to gain deeper insight into parental experience, including the burden of caring for children with haemophilia …”

“…Caregiver burden in haemophilia has been assessed alongside other LTCs using generic instruments such as the Zarit Scale, the Impact on Family Scale and the Caregiver Burden Scale. 5,[11][12][13] More recently, haemophilia-specific instruments have been used to gain deeper insight into parental experience, 4 including the burden of caring for children with haemophilia. 14,15 The additional burden of the development of alloantibodies (inhibitors) against FVIII or FIX concentrates is well recognized.…”

The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)

“…A UK study in 20 caregivers of children with haemophilia revealed that economic impact and chronic disease of the caregiver affected their HRQoL . The National Health Service in the UK accepts caregiver burden as an important outcome measure in long‐term conditions .…”