학술논문
Costs of UK community care for individuals with recessive dystrophic epidermolysis bullosa: Findings of the Prospective Epidermolysis Bullosa Longitudinal Evaluation Study.
Document Type
Academic Journal
Author
Jeffs E; St John's Institute of Dermatology Guy's and St Thomas' Hospitals NHS Trust London UK.; Pillay E; St John's Institute of Dermatology Guy's and St Thomas' Hospitals NHS Trust London UK.; Ledwaba-Chapman L; Department of Population Health Sciences King's College London London UK.; Bisquera A; Department of Population Health Sciences King's College London London UK.; Robertson S; Department of Dermatology The Royal Children's Hospital Parkville Victoria Australia.; Department of Dermatology Royal Melbourne Hospital Melbourne Victoria Australia.; McGrath J; Department of Dermatology King's College London Faculty of Life Sciences and Medicine London UK.; Wang Y; Department of Population Health Sciences King's College London London UK.; Martinez A; Department of Dermatology Great Ormond Street Hospital for Children London UK.; Patel A; Anita Patel Health Economics Consulting Ltd London UK.; Mellerio J; Department of Population Health Sciences King's College London London UK.
Source
Publisher: John Wiley & Sons Ltd on behalf of British Association of Dermatologists Country of Publication: England NLM ID: 9918227353706676 Publication Model: eCollection Cited Medium: Internet ISSN: 2690-442X (Electronic) Linking ISSN: 2690442X NLM ISO Abbreviation: Skin Health Dis Subsets: PubMed not MEDLINE
Subject
Language
English
Abstract
Background: Recessive dystrophic epidermolysis bullosa (RDEB) is a rare inherited skin fragility disorder requiring multidisciplinary management. Information regarding costs of current standard treatment is scant.
Objectives: As part of a longitudinal natural history study, we explored the community care costs of UK patients with different forms of RDEB.
Methods: Fifty-nine individuals with RDEB provided detailed information on multiple facets of RDEB including disease severity scores (iscorEB, BEBS) and patient reported outcomes (quality of life evaluation in epidermolysis bullosa, iscorEB patient questionnaire). Costs data included time spent doing dressings, frequency of dressing changes, details of materials used, and paid and unpaid care.
Results: Overall costs of dressing materials and associated care were high in RDEB. Median annual costs across all subtypes for those using dressings ( n = 51) were over £26 000. For severe RDEB (RDEB-S), median costs were almost £90 000 per annum, with a median of 18 h per week spent on dressing changes. Half of working-age adults with RDEB were unemployed and 39% of carers were unable to take on full-time or part-time paid employment, adding to indirect costs and the financial burden from RDEB on families and society.
Conclusions: The findings demonstrate the high costs of care of RDEB, particularly for RDEB-S. The current expense supports the drive to develop new therapies which accelerate wound healing and diminish total wound burden, thereby reducing costs of dressings and care. While costly to bring to market, these might ultimately reduce the overall cost of treatment and also the impact on individuals living with this rare disease. The data also highlight the need for adequate reimbursement for EB care which can place significant financial strain on families.
Competing Interests: AEM and JEM have undertaken paid consultancy for Amryt Pharma and Krytsal Biotech.
(© 2023 The Authors. Skin Health and Disease published by John Wiley & Sons Ltd on behalf of British Association of Dermatologists.)
Objectives: As part of a longitudinal natural history study, we explored the community care costs of UK patients with different forms of RDEB.
Methods: Fifty-nine individuals with RDEB provided detailed information on multiple facets of RDEB including disease severity scores (iscorEB, BEBS) and patient reported outcomes (quality of life evaluation in epidermolysis bullosa, iscorEB patient questionnaire). Costs data included time spent doing dressings, frequency of dressing changes, details of materials used, and paid and unpaid care.
Results: Overall costs of dressing materials and associated care were high in RDEB. Median annual costs across all subtypes for those using dressings ( n = 51) were over £26 000. For severe RDEB (RDEB-S), median costs were almost £90 000 per annum, with a median of 18 h per week spent on dressing changes. Half of working-age adults with RDEB were unemployed and 39% of carers were unable to take on full-time or part-time paid employment, adding to indirect costs and the financial burden from RDEB on families and society.
Conclusions: The findings demonstrate the high costs of care of RDEB, particularly for RDEB-S. The current expense supports the drive to develop new therapies which accelerate wound healing and diminish total wound burden, thereby reducing costs of dressings and care. While costly to bring to market, these might ultimately reduce the overall cost of treatment and also the impact on individuals living with this rare disease. The data also highlight the need for adequate reimbursement for EB care which can place significant financial strain on families.
Competing Interests: AEM and JEM have undertaken paid consultancy for Amryt Pharma and Krytsal Biotech.
(© 2023 The Authors. Skin Health and Disease published by John Wiley & Sons Ltd on behalf of British Association of Dermatologists.)