Consensus statements for the biopsychosocial care of patients with epidermolysis bullosa South Africa: Part 2

Antoinette V Chateau^{1

2}, David Blackbeard^{3

4}, Carol Hlela^{5

6}, Martie Wege^{7

8}, Anne Armour^{7

8}, Thirona Naicker⁹, Ncoza Dlova², Serantha Foolchand^{10

11}, Angela Chetty¹², Sarah Ainsworth¹², Cassidy-Mae Shaw³, Reshmee Lachman¹³, Carl-Heinz Kruse¹⁴, Kavir Rajkumar¹⁵, Pieter Mare¹⁶, Andile Mchiza¹⁷, Heidi Shanahan¹⁸, Toni Roberts¹⁹, Shuaib Kauchali²⁰, Colleen Aldous²¹

Affiliations

¹ Department of Dermatology, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
² Department of Dermatology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.
³ Department of Clinical Psychology, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
⁴ Department of Psychiatry, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.
⁵ Department of Dermatology, Faculty of Health Sciences, Red Cross Children's Hospital, Cape Town, South Africa.
⁶ Department of Dermatology, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
⁷ Department of Paediatrics, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
⁸ Department of Paediatrics, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.
⁹ Department of Paediatrics, Clinical Genetics, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.
¹⁰ Department of Obstetrics and Gynaecology, Maternal and Fetal Medicine, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
¹¹ Department of Obstetrics and Gynaecology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.
¹² Department of Occupational Therapy, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
¹³ Department of Dietetics, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
¹⁴ Department of Ophthalmology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.
¹⁵ Department of Dentistry and Maxillofacial Surgery, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
¹⁶ Department of Orthopaedic Surgery, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
¹⁷ Department of Podiatry, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
¹⁸ Department of Physiotherapy, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
¹⁹ DEBRA South Africa, Cape Town, South Africa.
²⁰ Division of Community Paediatrics and Child Health, Department of Paediatrics and Child Health, School of Clinical Medicine, University of the Witwatersrand, Johannesburg, South Africa.
²¹ School of Clinical Medicine, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.

PMID: 40936640
PMCID: PMC12421568
DOI: 10.4102/hsag.v30i0.2964

Consensus statements for the biopsychosocial care of patients with epidermolysis bullosa South Africa: Part 2

Antoinette V Chateau et al. Health SA. 2025.

. 2025 Aug 15:30:2964.

doi: 10.4102/hsag.v30i0.2964. eCollection 2025.

Authors

Affiliations

¹ Department of Dermatology, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
² Department of Dermatology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.
³ Department of Clinical Psychology, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
⁴ Department of Psychiatry, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.
⁵ Department of Dermatology, Faculty of Health Sciences, Red Cross Children's Hospital, Cape Town, South Africa.
⁶ Department of Dermatology, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
⁷ Department of Paediatrics, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
⁸ Department of Paediatrics, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.
⁹ Department of Paediatrics, Clinical Genetics, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.
¹⁰ Department of Obstetrics and Gynaecology, Maternal and Fetal Medicine, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
¹¹ Department of Obstetrics and Gynaecology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.
¹² Department of Occupational Therapy, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
¹³ Department of Dietetics, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
¹⁴ Department of Ophthalmology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.
¹⁵ Department of Dentistry and Maxillofacial Surgery, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
¹⁶ Department of Orthopaedic Surgery, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
¹⁷ Department of Podiatry, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
¹⁸ Department of Physiotherapy, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.
¹⁹ DEBRA South Africa, Cape Town, South Africa.
²⁰ Division of Community Paediatrics and Child Health, Department of Paediatrics and Child Health, School of Clinical Medicine, University of the Witwatersrand, Johannesburg, South Africa.
²¹ School of Clinical Medicine, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.

PMID: 40936640
PMCID: PMC12421568
DOI: 10.4102/hsag.v30i0.2964

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

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Conflict of interest statement

The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.

Figures

**FIGURE 1**
Approach to anaemia in children with epidermolysis bullosa.

See this image and copyright information in PMC

References

1. Araújo, M., Brás, R., Frada, R., Guedes-Martins, L. & Lemos, P., 2017, ‘Caesarean delivery in a pregnant woman with epidermolysis bullosa: Anaesthetic challenges’, International Journal of Obstetric Anesthesia 30, 68–72. 10.1016/j.ijoa.2017.01.010 - DOI - PubMed
1. Arifi, M., Arifi, S., Demni, K., Bouhafs, M.A., Belkacem, R. & Barahioui, M., 2011, ‘Genitourinary complications as initial presentation of inherited epidermolysis bullosa’, African Journal of Paediatric Surgery 8(1), 72–74. 10.4103/0189-6725.78673 - DOI - PubMed
1. Bachir, Y., Daruich, A., Marie, C., Robert, M.P. & Bremond-Gignac, D., 2022, ‘Eye involvement and management in inherited epidermolysis bullosa’, Drugs 82, 1277–1285. 10.1007/s40265-022-01770-8 - DOI - PubMed
1. Baloch, M., Fitzwilliams, B., Mellerio, J., Lakasing, L., Bewley, S. & O’sullivan, G., 2008, ‘Anaesthetic management of two different modes of delivery in patients with dystrophic epidermolysis bullosa’, International Journal of Obstetric Anesthesia 17(2), 153–158. 10.1016/j.ijoa.2007.04.008 - DOI - PubMed
1. Bardes, C.L., 2012, ‘Defining “patient-centered medicine”’, New England Journal of Medicine 366, 782–783. 10.1056/NEJMp1200070 - DOI - PubMed

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Consensus statements for the biopsychosocial care of patients with epidermolysis bullosa South Africa: Part 2

Affiliations

Consensus statements for the biopsychosocial care of patients with epidermolysis bullosa South Africa: Part 2

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References