SG13 2023 Epidermolysis Bullosa Patient Insight Study: understanding carer quality of life

Abstract Epidermolysis bullosa (EB) imposes a significant quality-of-life impact, frequently positioning carers in central roles in patient management. One objective of the 2023 Epidermolysis Bullosa Patient Insight Study, conducted between January and May 2023, was to explore carers’ experiences through surveys and interviews of patients, carers and healthcare providers. This study was funded by Amryt Pharma and Krystal Biotech and undertaken on behalf of DEBRA UK. Among the 103 carers surveyed, 81% were female, 13% assumed full-time, stay-at-home caregiving responsibilities, 71% were parents of the patient and 78% resided with the patient. On average, carers dedicated 6 hours daily to caregiving, with those managing severe subtypes committing significantly more time, and wound care alone consuming around one-quarter of caregiving. Over half of carers reported ‘moderate to high’ levels of life disruption secondary to this, with 38% having ‘no time for personal hobbies or leisure’ and 52% feeling their lives were ‘placed on hold’. Echoing previously reported cultures of carer emotional repression, 59% of carers reported a significant mental health impact, yet 61% concealed this in life outside of caregiving, and only 29% expressed interest in respite care. Despite the considerable psychological impact, 75% of carers found the support available to them as inadequate. Overall, 46% felt that National Health Service (NHS) mental health support was inadequately tailored to the nuances of EB, with several reporting instances of themselves educating healthcare providers about EB. This highlights the need for improved personalization of mental health services for EB carers. Alongside pinpointing the physical and emotional toll of EB caregiving, this study highlights crucial areas for future research in the EB carer community – a cohort under-researched thus far, perhaps partly attributable to the rarity of EB itself. Understanding health-seeking behaviours in this cohort, and evaluating effects of caregiving on their health outcomes, may identify further areas of improvement in the NHS-led provisions presently available for EB carers. Further detailed qualitative study on the facilitators of, and barriers to, accessing respite may strengthen the role of charitable organizations like DEBRA UK, guiding further tailoring of wellbeing-protective resources for carers. In conclusion, this study provides preliminary insight into the complex factors impacting EB carers’ lives. We hope its findings will prompt further detailed investigation into this under-researched cohort, and allow clinicians, allied healthcare providers and organizations like DEBRA UK to better orientate the support provided. Holistic improvement in carer health and wellbeing funnels into improved patient care and subsequent quality of life, which itself is a fundamental shared goal within the EB community for patients, carers and service providers alike.