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Original Research
Consensus statements for the transdisciplinary care of patients with epidermolysis bullosa in South Africa: Part 1
Submitted: 09 January 2025 | Published: 06 August 2025
About the author(s)
Antoinette V. Chateau, Department of Dermatology, Faculty of Health Sciences, Greys Hospital, Pietermaritzburg, South Africa; and, Department of Dermatology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South AfricaCarol Hlela, Department of Dermatology, Faculty of Health Sciences, Red Cross Children’s Hospital, Cape Town, South Africa; and, Department of Dermatology, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa
Ncoza Dlova, Department of Dermatology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Thuraya Isaacs, Department of Dermatology, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa
Thirona Naicker, Department of Pediatrics, Clinical Genetics, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Tracey Nupen, Department of Paediatric and Child Health, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa; and, Paedspal Non-Profit Organisation, Cape Town, South Africa
Julia Ambler, Umduduzi Hospice Care for Children, Durban, South Africa; and, Department of Family Medicine, Faculty of Health Science, University of KwaZulu-Natal, Durban, South Africa; and, Department of Pediatrics, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Frans Maruma, Department of Dermatology, Faculty of Health Sciences, University of the Free State, Bloemfontein, South Africa
Lushen Pillay, Department of Dermatology, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa
Avumile Mankahla, Department of Internal Medicine and Pharmacology, Nelson Mandela Academic Hospital, Umtata, South Africa; and, Department of Internal Medicine and Pharmacology, Walter Sisulu University, Umtata, South Africa
Fatima Moosa, Private practice, The Derm Factor, Bloemfontein, South Africa
Jabulile Makhubele, Department of Dermatology, Faculty of Health Sciences, University of Pretoria, Pretoria, South Africa
Rannakoe Lehloenya, Division of Dermatology, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa
Willem I. Visser, Division of Dermatology, Department of Medicine, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa
Caridad Velazquez, Department of Anaesthesiology and Pain Management, Faculty of Health Sciences, Greys Hospital, Pietermaritzburg, South Africa
Sinead Cameron-Mackintosh, Simply Genetics, Hilton, KwaZulu-Natal, South Africa
Gail Todd, Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa
David Blackbeard, Department of Clinical Psychology, Faculty of Health Sciences, Greys Hospital, Pietermaritzburg, South Africa; and, Department of Psychiatry, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Colleen Aldous, School of Clinical Medicine, University of KwaZulu-Natal, Durban, South Africa
Abstract
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.
Aim: 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.
Setting: Multicentre, multiprovincial study involving healthcare practitioners from five South African provinces – KwaZulu-Natal, Gauteng (Johannesburg, Pretoria), Western Cape (Cape Town, Stellenbosch), Free State (Bloemfontein) and the Eastern Cape (Umtata).
Methods: 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.
Results: 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.
Conclusion: 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.
Contribution: This is the first consensus recommendation of care for patients with EB in Africa.
Keywords
Sustainable Development Goal
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