Barriers to care and the need for dental educational materials for the Lowe syndrome community: a survey of dentists

Background This study aimed to assess dentists’ experience in treating individuals with Lowe syndrome (LS), reasons they may be unable to provide dental care for individuals with LS, and perceptions of the need for educational materials tailored to the LS community regarding the dental setting. Methods A link to an electronic Qualtrics survey addressing these topics was emailed to the Tufts University School of Dental Medicine Alumni Network listserv. Results Data from 73 respondents were analyzed. Of the 57 who answered the question about having treated a patient with LS, three (5.3%) responded affirmatively. Among the 61 who answered why they might not be able to treat an individual with LS, the most common reasons were lack of experience treating children with special needs and not accepting medical assistance such as Medicaid/Medicare (both 31.1%). Of the 58 who responded to the item regarding the need for educational materials to support patients with LS in the dental setting, 47 (81.0%) agreed or strongly agreed. Conclusion Substantial barriers to dental care exist for individuals with LS. Educational materials about the dental setting should be developed for the LS community.