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

Abstract

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 caregiverreported 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.

Interprofessional Collaboration Improves Quality of Life of a Young Adult With Rett Syndrome

“…Patients with severe neurological conditions such as Rett syndrome have more complex, acute, and chronic needs for medical and dental care [1,[3][4][5]. At the same time, they have more likely to face financial and logistical barriers to care [8,9]. Negative social drivers of health negatively impact outcomes for oral and medical care [9,11,12].…”

“…At the same time, they have more likely to face financial and logistical barriers to care [ 8 , 9 ]. Negative social drivers of health negatively impact outcomes for oral and medical care [ 9 , 11 , 12 ]. These medical, oral, and social conditions make providing optimal for some patients challenging.…”

“…Common oral health conditions associated with RTT include bruxism, gingivitis, and dental caries [ 4 , 5 ], with reported prevalence of bruxism estimated between 80-94% [ 6 , 7 ]. Despite these significant oral health needs, families of children with special health care needs, including RTT, are more likely than healthy children to face financial and dentist-related barriers to care [ 8 , 9 ]. Parents of children with special health needs must often prioritize multiple, urgent medical issues and navigate waitlists, with limited time and resources [ 9 ].…”

“…Despite these significant oral health needs, families of children with special health care needs, including RTT, are more likely than healthy children to face financial and dentist-related barriers to care [ 8 , 9 ]. Parents of children with special health needs must often prioritize multiple, urgent medical issues and navigate waitlists, with limited time and resources [ 9 ]. Parents of children with RTT have reported difficulty in finding a dentist who is willing to treat their child, due to behavioral disturbances and other special needs [ 9 ].…”

“…Parents of children with special health needs must often prioritize multiple, urgent medical issues and navigate waitlists, with limited time and resources [ 9 ]. Parents of children with RTT have reported difficulty in finding a dentist who is willing to treat their child, due to behavioral disturbances and other special needs [ 9 ].…”