Evidence map›Paper›PMID 40936640›Full record

ArticleHealth SA = SA Gesondheid2025

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

Antoinette V Chateau, David Blackbeard, Carol Hlela, Martie Wege, Anne Armour, Thirona Naicker, Ncoza Dlova, Serantha Foolchand, Angela Chetty, Sarah Ainsworth and 10 more

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In one paragraph

Article in Health SA = SA Gesondheid, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

20 authors.

Antoinette V ChateauDepartment of Dermatology, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0000-0001-9825-6191
David BlackbeardDepartment of Clinical Psychology, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0000-0001-5609-9343
Carol HlelaDepartment of Dermatology, Faculty of Health Sciences, Red Cross Children's Hospital, Cape Town, South Africa.ORCID https://orcid.org/0000-0002-8028-3252
Martie WegeDepartment of Paediatrics, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0009-0007-9462-1244
Anne ArmourDepartment of Paediatrics, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0009-0005-8731-2609
Thirona NaickerDepartment of Paediatrics, Clinical Genetics, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.ORCID https://orcid.org/0000-0001-7146-7159
Ncoza DlovaDepartment of Dermatology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.ORCID https://orcid.org/0000-0002-2425-3905
Serantha FoolchandDepartment of Obstetrics and Gynaecology, Maternal and Fetal Medicine, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0009-0007-4809-0868
Angela ChettyDepartment of Occupational Therapy, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0009-0003-8362-3472
Sarah AinsworthDepartment of Occupational Therapy, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0000-0002-3567-2195
Cassidy-Mae ShawDepartment of Clinical Psychology, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0000-0002-4291-1641
Reshmee LachmanDepartment of Dietetics, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0009-0004-9024-7230
Carl-Heinz KruseDepartment of Ophthalmology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.ORCID https://orcid.org/0000-0002-8805-8383
Kavir RajkumarDepartment of Dentistry and Maxillofacial Surgery, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0009-0004-5037-7807
Pieter MareDepartment of Orthopaedic Surgery, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0000-0003-1599-7651
Andile MchizaDepartment of Podiatry, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0009-0000-2407-9874
Heidi ShanahanDepartment of Physiotherapy, Faculty of Health Sciences, Grey's Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0009-0003-7149-5274
Toni RobertsDEBRA South Africa, Cape Town, South Africa.ORCID https://orcid.org/0009-0008-8844-5851
Shuaib KauchaliDivision of Community Paediatrics and Child Health, Department of Paediatrics and Child Health, School of Clinical Medicine, University of the Witwatersrand, Johannesburg, South Africa.ORCID https://orcid.org/0000-0001-6730-6037
Colleen AldousSchool of Clinical Medicine, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.ORCID https://orcid.org/0000-0002-7199-9160

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

cultural relevanceepidermolysis bullosamultidisciplinaryresource-limitedSouth Africa

Identifiers

PMID40936640
PMCPMC12421568

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.