Enablers and barriers in dental attendance in Rett syndrome: an international observational study

AIMS: Intellectual and developmental disabilities are heterogeneous in aetiology and presentation, and one cannot make assumptions about the oral health barriers of those with Rett syndrome (RTT) based on findings from generic studies. This study investigated caregivers’ perceptions regarding access to dental care for those with (RTT), and associations of dental treatments received by those with RTT with their caregivers’ perceived value of oral health and perception of their own as well as their daughter's dental anxiety. METHODS AND RESULTS: Retrospective observational data of a subset of individuals with confirmed MECP2 mutations in the InterRett database (n = 216) were used to explore caregiver‐related factors and their relationships with longitudinal data on dental service utilisation, using negative binomial regression. The main reported barriers to dental care access for individuals with RTT were primarily dentist‐related in nature, regardless of dental service history. Those with reported dental nonattendance were of older age. Increasing levels of caregiver‐reported dental fear were associated with less frequent dental check‐ups or for any appointments for affected individuals. CONCLUSIONS: Dentist‐related barriers and caregiver‐reported anxiety may both adversely affect dental attendance for those with RTT. Future research should explore caregivers’ beliefs and oral health literacy.