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Original Research
Consensus statements for the biopsychosocial care of patients with epidermolysis bullosa South Africa: Part 2
Submitted: 10 January 2025 | Published: 15 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 AfricaDavid Blackbeard, Department of Clinical Psychology, Faculty of Health Sciences, Grey’s Hospital, Pietermaritzburg, South Africa; and, Department of Psychiatry, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Carol 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
Martie Wege, Department of Paediatrics, Faculty of Health Sciences, Grey’s Hospital, Pietermaritzburg, South Africa; and, Department of Paediatrics, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Lauren Armour, Department of Paediatrics, Faculty of Health Sciences, Grey’s Hospital, Pietermaritzburg, South Africa; and, Department of Paediatrics, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Thirona Naiker, Department of Paediatrics, Clinical Genetics, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Ncoza Dlova, Department of Dermatology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Serantha Foolchand, Department of Obstetrics and Gynaecology, Maternal and Fetal Medicine, Faculty of Health Sciences, Grey’s Hospital, Pietermaritzburg, South Africa; and, Department of Obstetrics and Gynaecology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Angela Chetty, Department of Occupational Therapy, Faculty of Health Sciences, Grey’s Hospital, Pietermaritzburg, South Africa
Sarah Ainsworth, Department of Occupational Therapy, Faculty of Health Sciences, Grey’s Hospital, Pietermaritzburg, South Africa
Cassidy-Mae Shaw, Department of Clinical Psychology, Faculty of Health Sciences, Grey’s Hospital, Pietermaritzburg, South Africa
Reshmee Lachman, Department of Dietetics, Faculty of Health Sciences, Grey’s Hospital, Pietermaritzburg, South Africa
Carl-Heinz Kruse, Department of Ophthalmology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Kavir Rajkumar, Department of Dentistry and Maxillofacial Surgery, Faculty of Health Sciences, Grey’s Hospital, Pietermaritzburg, South Africa
Pieter Mare, Department of Orthopaedic Surgery, Faculty of Health Sciences, Grey’s Hospital, Pietermaritzburg, South Africa
Andile Mchiza, Department of Podiatry, Faculty of Health Sciences, Grey’s Hospital, Pietermaritzburg, South Africa
Heidi Shanahan, Department of Physiotherapy, Faculty of Health Sciences, Grey’s Hospital, Pietermaritzburg, South Africa
Toni Roberts, DEBRA South Africa, Cape Town, South Africa
Shuaib Kauchali, Division of Community Paediatrics and Child Health, Department of Paediatrics and Child Health, School of Clinical Medicine, University of the Witwatersrand, Johannesburg, South Africa
Colleen Aldous, School of Clinical Medicine, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Abstract
Background: Epidermolysis bullosa (EB) is a rare, incurable inherited mucocutaneous blistering disorder that can lead to multisystemic complications. In Africa, there are no established consensus statements or clinical guidelines for the care of patients with EB.
Aim: To develop comprehensive transdisciplinary consensus statements for the care of patients with EB. This article (Part 2) presents 24 consensus statements focused on the biopsychosocial aspects of EB care. Part 1 addressed diagnostic and clinical management and resulted in 16 consensus statements.
Setting: This was a multicentre, multiprovincial study involving healthcare practitioners from Eastern Cape, Free State, Gauteng, KwaZulu-Natal and Western Cape.
Methods: In collaboration with patients and families, the transdisciplinary team of experts developed consensus-based statements through a modified Delphi process. This iterative process involved three consensus rounds with an 80% agreement threshold for each action point to ensure validity and reliability.
Results: In total, 24 consensus statements were endorsed. These included holistic patient and family care; cultural considerations; educational inclusion; paediatric and emergency care; psychosocial care; nutritional; gynaecological and ophthalmic support; occupational therapy; physiotherapy and orthopaedic; dental and podiatric management.
Conclusion: Comprehensive transdisciplinary care is essential for addressing the holistic needs of patients with EB and their families, particularly in resource-limited and culturally diverse settings.
Contribution: This is the first set of consensus statements for the care of EB in South Africa and the broader African continent, offering a culturally sensitive, patient-centred framework for multidisciplinary care.
Keywords
Sustainable Development Goal
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