Treatment costs for individuals with recessive dystrophic epidermolysis bullosa (RDEB): Findings of the pebles study.

Abstract

Introduction &objectives: Introduction: Little information exists about the cost of treating individuals with RDEB. PEBLES is a prospective register study designed to record detailed information about what happens to an individual with RDEB and how it affects them over time, including costs of dressings and associated treatment. Objective(s): To report preliminary findings regarding the cost of dressings and associated treatment of individuals with RDEB. Materials &methods: Individuals recruited to PEBLES were reviewed annually for those 10 years and older and 6-monthly for those under 10 years. At each review, participants reported their weekly use of dressings and fixings, and details regarding care provision and funding. Costs are reported per annum (pa) as GBP () and were calculated as at August 2017; cost of paid care was calculated at 12.50 per hour regardless of location or carer's actual pay scale. The study was ethically approved by the UK Research Ethics Committee and Health Research Authority Results: A total of 53 patients with RDEB had an initial review at which the total annual cost of wound dressings, tubular bandages and retention garments was 2,431,844; as some participants provided incomplete data, these findings are a conservative estimate. The average wound care cost ranged from 2,709 pa for RDEB inversa (RDEBINV, n=5), increasing to 81,858 pa for RDEB generalised severe (RDEB-GS, n= 18); participants with RDEB-GS accounted for 61% of total annual dressings costs. Only four participants did not require any dressings: 2 with RDEB-generalised intermediate (RDEB-GI) and 2 with RDEB-INV. The average time taken to change dressings ranged from 105 minutes daily for RDEB-GS to 39 minutes daily for RDEB-GI. Most participants (71%) changed their dressings all at once, with patch-ups as required. Ten (56%) participants with RDEB-GS received paid care at an average cost of 31,980 pa. Thirteen (72%) participants with RDEB-GS received unpaid care from a family member who was unable to seek employment due to providing daily EB care, whereas only 4 carers (25%) of those with RDEB-GI and 1 (14%) for RDEB-other were financially impacted. Conclusion(s): Individuals with RDEB-GS and their families have the greatest financial impact; the cost of wound and paid care is up to 30 times higher than in other RDEB types. These data highlight the economic burden of wound care to families living with EB as well as the wider healthcare system.