The Burden of Bleeds in Caregivers’ (BBC) Study
Research type
Research Study
Full title
The Burden of Bleeds and other determinants on caregivers of children and young adults with haemophilia
IRAS ID
206403
Contact name
Kate Khair
Contact email
Sponsor organisation
Haemnet
Duration of Study in the UK
0 years, 2 months, 0 days
Research summary
Haemophilia is a rare disorder caused by a defect of the X chromosome. It affects approximately 1:5000 males. Haemophilia A (factor VIII deficiency) is the most common haemophilia affecting about 85% of cases, haemophilia B (factor IX deficiency) is much less common. Haemophilia causes bleeding mostly into the weight bearing joints (knees and ankles)and causes arthritic damage if untreated. The majority of children are now treated to prevent bleeds.
Treatment to replacement the missing factor can be when a bleed occurs (on-demand treatment) or regularly and continuously (prophylactic treatment). Dose and frequency of Treatment depends on severity,age,lifestyle,and treatment availability.
Although the management of haemophilia has improved significantly over recent decades, patients still report the burden of their haemophilia including treatment complications, pain, arthritis, psychological issues (stress, coping, anxiety, depression, stigmatisation and discrimination)and economic implications.
Caring for a child with haemophilia is challenging and can impact on caregivers’ financial situation, wellbeing, and health status, affecting the caregivers burden. Furthermore the caregiver may have to give up their job to care for their child; partly as they also have to take the child to regular hospital visits.
The National Institute of Clinical Excellence recognises caregiver burden as an outcome measure in long term conditions. A haemophilia specific questionnaire assessing caregiver burden has been recently developed. The HEMOphilia associated CAregiver Burden scale (HEMOCAB™) will be used in this study of 120 European caregivers to describe caregiver burden across clinical sub-groups in seven EU countries.
REC name
West of Scotland REC 3
REC reference
16/WS/0183
Date of REC Opinion
21 Sep 2016
REC opinion
Further Information Favourable Opinion