Oral health care pathways for patients with epidermolysis bullosa: A position statement from the European reference network for rare skin diseases
Year: 2024
Type: article
Abstract: BACKGROUND: Inherited epidermolysis bullosa (EB) comprises a group of genetic disorders characterized by skin fragility and unique oral features. It requires interdisciplinary care from several health professionals, including oral health teams. Modern dentistry encompasses a wide range of therapeutic options performed by specialists from different fields. OBJECTIVE: To guide clinicians caring for patients with different types of EB to seek care from different dental services. METHODS: Dental treatment needs for patients with EB were identified based on a systematic literature review. A panel of experts was consulted and invited to provide additional information through an open-ended question over 7 months. A Delphi study was applied over two rounds to the resulting pathways design. The threshold of consensus was set a priori at 75%. Patients' representatives revised the final document. RESULTS: The panel (n = 17) agreed on a total of 55 recommendations divided into six groups according to the severity of oral compromise in EB (52 recommendations were agreed on in round 1, and three were agreed on in round 2). CONCLUSIONS: Dental care pathways are presented for each type of EB. Specific considerations are discussed according to clinical features, including age of first referral, frequency of follow-up appointments, and list of dental specialties involved in the care of patients with EB.
DOI: 10.1111/jdv.20498
Institutions: University of Freiburg, University Medical Center Freiburg, ERN Skin, University of Chile, Medical University of Vienna, Ludwig-Maximilians-Universität München, Birmingham Children's Hospital, Sigmund Freud Privatuniversität Wien, Witten/Herdecke University, Centre Hospitalier Universitaire de Nice, Sheffield Teaching Hospitals NHS Foundation Trust, University College London, Medizinische Hochschule Hannover, Universidade de Santiago de Compostela, Universitair Ziekenhuis Leuven, Carol Davila University of Medicine and Pharmacy, University Medical Center Groningen, University of Groningen, Paracelsus Medical University, EB House Austria, Guy's and St Thomas' NHS Foundation Trust, Hôpital Necker-Enfants Malades, Université Paris Cité, Assistance Publique – Hôpitaux de Paris
Language: English
Subfield: Cell Biology
Domain: Life Sciences
Open Access status: hybrid
Estimated APC paid: $5,190
OpenAlex ID: W4405386293