Evidence map›Paper›PMID 40936636›Full record

ArticleHealth SA = SA Gesondheid2025

Consensus statements for the transdisciplinary care of patients with epidermolysis bullosa in South Africa: Part 1.

Antoinette V Chateau, Carol Hlela, Ncoza Dlova, Thuraya Isaacs, Thirona Naicker, Tracey Nupen, Julia Ambler, Frans Maruma, Lushen Pillay, Avumile Mankahla and 9 more

Abstract read
PubMed Full text at PMC Publisher
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. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. Article
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

19 authors.

Antoinette V ChateauDepartment of Dermatology, Faculty of Health Sciences, Greys Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0000-0001-9825-6191
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
Ncoza DlovaDepartment of Dermatology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.ORCID https://orcid.org/0000-0002-2425-3905
Thuraya IsaacsDepartment of Dermatology, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.ORCID https://orcid.org/0000-0001-8141-4368
Thirona NaickerDepartment of Pediatrics, Clinical Genetics, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.ORCID https://orcid.org/0000-0001-7146-7159
Tracey NupenDepartment of Paediatric and Child Health, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.ORCID https://orcid.org/0009-0005-8209-3478
Julia AmblerUmduduzi Hospice Care for Children, Durban, South Africa.ORCID https://orcid.org/0000-0001-5327-0029
Frans MarumaDepartment of Dermatology, Faculty of Health Sciences, University of the Free State, Bloemfontein, South Africa.ORCID https://orcid.org/0000-0002-4771-2115
Lushen PillayDepartment of Dermatology, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.ORCID https://orcid.org/0000-0001-5132-9955
Avumile MankahlaDepartment of Internal Medicine and Pharmacology, Nelson Mandela Academic Hospital, Umtata, South Africa.ORCID https://orcid.org/0009-0005-9509-7726
Fatima MoosaPrivate practice, The Derm Factor, Bloemfontein, South Africa.ORCID https://orcid.org/0009-0007-2212-0184
Jabulile MakhubeleDepartment of Dermatology, Faculty of Health Sciences, University of Pretoria, Pretoria, South Africa.ORCID https://orcid.org/0009-0009-0292-5836
Rannakoe LehloenyaDivision of Dermatology, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.ORCID https://orcid.org/0000-0002-1281-1789
Willem I VisserDivision of Dermatology, Department of Medicine, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa.ORCID https://orcid.org/0000-0003-2701-4632
Caridad VelazquezDepartment of Anaesthesiology and Pain Management, Faculty of Health Sciences, Greys Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0000-0002-6126-1277
Sinead Cameron-MackintoshSimply Genetics, Hilton, KwaZulu-Natal, South Africa.ORCID https://orcid.org/0000-0001-6705-8766
Gail ToddDepartment of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.ORCID https://orcid.org/0009-0006-2029-5848
David BlackbeardDepartment of Clinical Psychology, Faculty of Health Sciences, Greys Hospital, Pietermaritzburg, South Africa.ORCID https://orcid.org/0000-0001-5609-9343
Colleen AldousSchool of Clinical Medicine, 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, 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.

Indexed as

clinical carecomplicationsconsensus recommendationsdiagnosisepidermolysis bullosagenetic counsellingpainpalliative carepreventionpruritustransdisciplinary care

Identifiers

PMID40936636
PMCPMC12421581

What OpenQuestion holds

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Registered trials

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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.