Resumen

CHATEAU, Antoinette V. et al. Consensus statements for the biopsychosocial care of patients with epidermolysis bullosa South Africa: Part 2. Health SA Gesondheid (Online) [online]. 2025, vol.30, pp.1-10. ISSN 2071-9736.  https://doi.org/10.4102/hsag.v30i0.2964.

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.

Palabras clave : epidermolysis bullosa; multidisciplinary; cultural relevance; resource-limited; South Africa.

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