Presentation (CTI)

OBJECTIVES: Epidermolysis bullosa (EB) describes a group of lifelong, rare, inherited skin fragility disorders, characterised by frequent skin blistering, debilitating pain and pruritus, and systemic complications. Patients often require substantial support from one or more informal carers, daily. Data on the impact of EB on the health-related quality of life (HRQoL) of carers is limited. The EB Insights Study, conducted by DEBRA UK, aimed to collect data to capture the impact of EB on daily life, including the impacts on carers.
METHODS: The Insights study collected data from n=103 carers of people living with EB via online surveys. Topics included time spent per day on different caring activities, access to mental health support, and agreeability to accessing respite and other forms of support.
RESULTS: Carer respondents represented a broad demographic encompassing different genders (81% female, 19% male, 1% non-binary), ethnicities (91% white), and relationships to the person with EB (child 71%, partner/spouse 10%, other family member 8%, friend 6%, sibling 3%, parent 2%). On a typical day, carers spend an average of 1.3 hours assisting with wound care, 1.2 hours assisting with personal hygiene, 1.1 hours checking the patient at night, and 0.6 hours assisting with getting dressed. 52% of carers agreed that their own life had been put on hold, and 61% agreed their caregiving responsibility has had a moderate/high impact on their ability to enjoy life. 75% agreed that carers required more emotional support than what is currently available, and 13% agreed that they had struggled to access mental health support when they needed it.
CONCLUSIONS: The Insights Study 2023 provides a body of quantitative and qualitative data that demonstrates the amount of time informal carers spend on different caring activities, and the substantial impact that caring for someone living with EB has on HRQoL.