Dental care access for dystrophic epidermolysis bullosae children in Russian Federation

Abstract

To assess the quality and access to dental care for children with dystrophic epidermolysis bullosae (DEB) living in RF regions. 181 (55.9%) out of 324 DEB children registered in RF were enrolled in the study. The parents filled the survey assessing primary examination time, annual number of visits, quality of dental care and dental facilities, as well as access to urgent dental care, dental care under general anesthesia and dental caries prevention. 37.6% of children do not have regular dental examinations. Among these only in 13 cases the parents do not understand the importance of regular dental care and caries prevention, while in 55 cases the reasons are the absence of pediatric dentist and the refusal of dentist to perform examination and treatment. Only parents of 72 (40%) from 181 children think then can get proper dental care at the place of residence. Parents of 103 children stated the presence of facilities for dental treatment under general anesthesia at the place of residence but 40 of them could not have the access to it in case of urgent dental care need. In 61 cases (33.7%) the family must move to federal centers to receive urgent dental care and almost one third of children (51 from 181) receive any kind of dental treatment in federal institutions in Moscow. A large part of children with DEB living in distant RF regions have no access even to urgent dental care with cases of dentist's refusal to perform dental examination and treatment because of 'distressing' visual aspect of some DEB patients. This leads to the necessity for the family to move to state federal centers to receive dental treatment which for the financial reasons makes impossible proper frequency of dental examinations and preventive measures resulting in many cases of advanced oral pathology where multiply teeth extractions are needed.