{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T00:30:03Z","timestamp":1791333003570,"version":"4.3.1"},"reference-count":44,"publisher":"AOSIS","license":[{"start":{"date-parts":[[2025,8,6]],"date-time":"2025-08-06T00:00:00Z","timestamp":1754438400000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"abstract":"<jats:p>Background: Epidermolysis bullosa (EB) is a rare, painful and blistering genodermatosis with no cure. Treatment aims to prevent new lesions and manage complications. Previously, there were no management guidelines or consensus recommendations for patients with EB in Africa.\n\nAim: The aim of this study is to produce a comprehensive, transdisciplinary and practical care guide that is contextually appropriate to the cultural setting and resource limitations in South Africa.\n\nSetting: Multicentre, multiprovincial study involving healthcare practitioners from five South African provinces \u2013 KwaZulu-Natal, Gauteng (Johannesburg, Pretoria), Western Cape (Cape Town, Stellenbosch), Free State (Bloemfontein) and the Eastern Cape (Umtata).\n\nMethods: Consensus recommendations for the care of patients with EB were developed by a transdisciplinary team of specialists in consultation with EB patients. The modified Delphi technique was used to reach a robust consensus with a threshold of 80% for each action point to ensure the validity and reliability of the recommendations.\n\nResults: In all, 16 consensus statements were developed, and the main themes included the clinical clues to the diagnosis, complications as per the subtype of EB, diagnostics in a resource-limited environment, management of EB, pruritus and pain, palliative care and genetic counselling.\n\nConclusion: A transdisciplinary approach is essential for the holistic care of patients and their families with EB in the context of their resource limitations and cultural diversity providing much-needed guidance for clinicians in South Africa and similar settings.\n\nContribution: This is the first consensus recommendation of care for patients with EB in Africa.<\/jats:p>","DOI":"10.4102\/hsag.v30i0.2963","type":"journal-article","created":{"date-parts":[[2025,8,5]],"date-time":"2025-08-05T14:22:18Z","timestamp":1754403738000},"update-policy":"https:\/\/doi.org\/10.4102\/crossmark-policy","source":"Crossref","is-referenced-by-count":1,"title":["Consensus statements for the transdisciplinary care of patients with epidermolysis bullosa in South Africa: Part 1"],"prefix":"10.4102","volume":"30","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9825-6191","authenticated-orcid":false,"given":"Antoinette","family":"Chateau","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8028-3252","authenticated-orcid":false,"given":"Carol","family":"Hlela","sequence":"additional","affiliation":[{"id":[{"id":"https:\/\/ror.org\/04d6eav07","id-type":"ROR","asserted-by":"publisher"}],"name":"Red Cross War Memorial Children's 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bullosa: Consensus-based hands-on instructions for neonates and postneonates\u2019, Journal of the American Academy of Dermatology 91(2), 290\u2013299. https:\/\/doi.org\/10.1016\/j.jaad.2024.04.014","DOI":"10.1016\/j.jaad.2024.04.014"},{"key":"ref1","doi-asserted-by":"crossref","unstructured":"Arbuckle, H.A., 2010, \u2018Bathing for individuals with epidermolysis bullosa\u2019, Dermatologic Clinics 28(2), 265\u2013266. https:\/\/doi.org\/10.1016\/j.det.2010.01.003","DOI":"10.1016\/j.det.2010.01.003"},{"key":"ref2","doi-asserted-by":"crossref","unstructured":"Boeira, V.L., Souza, E.S., Rocha Bde, O., Oliveira, P.D., Oliveira Mde, F., R\u00eago, V.R. et al., 2013, \u2018Inherited epidermolysis bullosa: Clinical and therapeutic aspects\u2019, Anais Brasileiros de Dermatologia 88(2), 185\u2013198. https:\/\/doi.org\/10.1590\/S0365-05962013000200001","DOI":"10.1590\/S0365-05962013000200001"},{"key":"ref3","doi-asserted-by":"crossref","unstructured":"Chateau, A.V., Blackbeard, D., Aldous, C., Dlova, N. & Shaw, C.-M., 2024a, \u2018The impact, perceptions and needs of parents of children with epidermolysis bullosa\u2019, South African Family Practice 66(1), e1\u2013e13. https:\/\/doi.org\/10.4102\/safp.v66i1.5897","DOI":"10.4102\/safp.v66i1.5897"},{"key":"ref4","doi-asserted-by":"crossref","unstructured":"Chateau, A.V., Blackbeard, D., Aldous, C., Dlova, N. & Shaw, C.M., 2024b, \u2018Lived experiences of patients with epidermolysis bullosa: A rare genetic skin disease\u2019, Health SA 29, 2824. https:\/\/doi.org\/10.4102\/hsag.v29i0.2824","DOI":"10.4102\/hsag.v29i0.2824"},{"key":"ref5","doi-asserted-by":"crossref","unstructured":"Chateau, A. V., Gqaleni, N., Aldous, C., Dlova, N. & Blackbeard, D., 2023, \u2018A qualitative study on traditional healers\u2019 perceptions and management of epidermolysis bullosa\u2019, Health SA 28, 2266. https:\/\/doi.org\/10.4102\/hsag.v28i0.2355","DOI":"10.4102\/hsag.v28i0.2355"},{"key":"ref6","doi-asserted-by":"crossref","unstructured":"Chong, S.C., Hon, K.L., Yuen, L.Y.P., Choi, P.C.L., Ng, W.G.G. & Chiu, T.W., 2021, \u2018Neonatal epidermolysis bullosa: Lessons to learn about genetic counseling\u2019, Journal of Dermatological Treatment 32(1), 29\u201332. https:\/\/doi.org\/10.1080\/09546634.2018.1527999","DOI":"10.1080\/09546634.2018.1527999"},{"key":"ref7","unstructured":"Debra International, 2017, Skin and wound care in epidermolysis bullosa, viewed 24 November 2024, from https:\/\/www.debra-international.org\/skin-and-wound-care-in-eb."},{"key":"ref8","unstructured":"Denyer, J., Pillay, E. & Clapham, J., 2017, Skin and wound care in epidermlysis bullosa, viewed 24 November 2024, from https:\/\/www.debra-international.org\/skin-and-wound-care-in-eb-cpg."},{"key":"ref9","unstructured":"Denyer, J. & Stevens, L., 2010, \u2018Bathing in epidermolysis bullosa: Benefit over trauma?\u2019, Wounds UK 6, 79\u201384."},{"key":"ref10","doi-asserted-by":"crossref","unstructured":"El Hachem, M., Zambruno, G., Bourdon-Lanoy, E., Ciasulli, A., Buisson, C., Hadj-Rabia, S. et al., 2014a, \u2018Multicentre consensus recommendations for skin care in inherited epidermolysis bullosa\u2019, Orphanet Journal of Rare Diseases 9, 76\u201376. https:\/\/doi.org\/10.1186\/1750-1172-9-76","DOI":"10.1186\/1750-1172-9-76"},{"key":"ref11","doi-asserted-by":"crossref","unstructured":"Fine, J.D., 2016, \u2018Epidemiology of inherited epidermolysis bullosa based on incidence and prevalence estimates from the National Epidermolysis Bullosa Registry\u2019, JAMA Dermatology 152(11), 1231\u20131238. https:\/\/doi.org\/10.1001\/jamadermatol.2016.2473","DOI":"10.1001\/jamadermatol.2016.2473"},{"key":"ref12","doi-asserted-by":"crossref","unstructured":"Fine, J.-D. & Mellerio, J., 2009a, \u2018Extracutaneous manifestations and complications of inherited epidermolysis bullosa Part I. 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Other organs\u2019, Journal of the American Academy of Dermatology 61(3), 387\u2013402. https:\/\/doi.org\/10.1016\/j.jaad.2009.03.053","DOI":"10.1016\/j.jaad.2009.03.053"},{"key":"ref14","doi-asserted-by":"crossref","unstructured":"Fine, J.-D., Bruckner-Tuderman, L., Eady, R.a.J., Bauer, E.A., Bauer, J.W., Has, C. et al., 2014, \u2018Inherited epidermolysis bullosa: Updated recommendations on diagnosis and classification\u2019, Journal of the American Academy of Dermatology 70(6), 1103\u20131126. https:\/\/doi.org\/10.1016\/j.jaad.2014.01.903","DOI":"10.1016\/j.jaad.2014.01.903"},{"key":"ref15","doi-asserted-by":"crossref","unstructured":"Fine, J.-D., Johnson, L.B., Weiner, M. & Suchindran, C., 2008, \u2018Cause-specific risks of childhood death in inherited epidermolysis bullosa\u2019, Journal of pediatrics 152(2), 276\u2013280. https:\/\/doi.org\/10.1016\/j.jpeds.2007.06.039","DOI":"10.1016\/j.jpeds.2007.06.039"},{"key":"ref16","doi-asserted-by":"crossref","unstructured":"Fonder, M.A., Lazarus, G.S., Cowan, D.A., Aronson-Cook, B., Kohli, A.R. & Mamelak, A.J., 2008, \u2018Treating the chronic wound: A practical approach to the care of nonhealing wounds and wound care dressings\u2019, Journal of the American Academy of Dermatology 58(2), 185\u2013206. https:\/\/doi.org\/10.1016\/j.jaad.2007.08.048","DOI":"10.1016\/j.jaad.2007.08.048"},{"key":"ref17","doi-asserted-by":"crossref","unstructured":"Gattrell, W.T., Logullo, P., Van Zuuren, E.J., Price, A., Hughes, E.L., Blazey, P. et al., 2024, \u2018ACCORD (ACcurate COnsensus Reporting Document): A reporting guideline for consensus methods in biomedicine developed via a modified Delphi\u2019, PLoS Med 21(1), e1004326. https:\/\/doi.org\/10.1371\/journal.pmed.1004326","DOI":"10.1371\/journal.pmed.1004326"},{"key":"ref18","doi-asserted-by":"crossref","unstructured":"Goldschneider, K.R., Good, J., Harrop, E., Liossi, C., Lynch-Jordan, A., Martinez, A.E. et al., 2014, \u2018Pain care for patients with epidermolysis 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