Barriers, Benefits and Complications of Orthodontic Treatment in Patients with Epidermolysis Bullosa: A Patient-Reported Cross-Sectional Study

Introduction: Epidermolysis Bullosa (EB) is a rare genetic condition with skin and mucosal fragility. Patients with EB present extra- and intraoral manifestations that can limit their access to dental treatment, including orthodontic treatment. This research aims to determine the barriers, benefits and complications of orthodontic treatment reported by a group of patients living with EB. Materials and Methods: This observational study included n = 101 patients with a genetic diagnosis of EB. After their regular dental consultation, they were interviewed about factors they considered barriers to accessing orthodontic treatment. Those who underwent orthodontic treatment (n = 24) reflected about their perceived benefits and complications from the therapy. Data were analysed with descriptive statistics and multiple Fisher’s exact tests with false discovery rate (FDR) correction. Results: The most prevalent barrier was that most patients with EB had never been evaluated by an orthodontist (74.3%), even if the teams had an orthodontist. Other barriers included distance to the treatment centre (42.6%), poor oral hygiene (27.7%) and poor oral health status (26.7%). Patients with limited mouth opening perceived greater treatment benefit compared to those without this limitation (φ = −0.28, p = 0.0242), while an increasing age was associated with a reduced perception of treatment benefit (Cramér’s V = 0.29, p = 0.0404). Among those who underwent orthodontic treatment, the most prevalent benefits of orthodontic treatment were aesthetic improvement (62.5%), oral hygiene improvement (20.8%) and occlusal stability (12.5%), while the most prevalent complications were wounds and ulcers (75.0%), gingivitis (54.1%), poor oral hygiene (41.6%) and caries (33.3%). Discussion: People living with EB reported different barriers to orthodontic treatment relating to psychosocial and professional aspects, which vary according to the EB type and severity. The involvement of orthodontists in multidisciplinary special care teams and the reduction in access barriers to dental specialities can be facilitated by a more comprehensive understanding of conditions such as EB.