Several barriers to dental care – including a lack of understanding by clinicians and long waiting lists – were reported by caregivers in a recent study as making it more difficult to ensure good oral health for people with the condition. of Rett’s syndrome.
Researchers noted that a caregiver’s own anxiety about dental visits was also among the barriers to good oral health care for patients.
“Dentist-related barriers and caregiver-reported anxiety can both have a negative effect on dental attendance for people with the condition. [Rett]”, wrote the team. “Future research should explore caregiver beliefs and oral health literacy.”
The study, “Facilitators and barriers to dental attendance in Rett syndrome: an international observational study”, led by Australian researchers, was published in the journal Special care in dentistry.
Rett syndrome is a neurological disorder affecting almost exclusively women, in which autism-like features, intellectual functional declines, and communication problems are common. Oral problems, such as bruxism – grinding and clenching of the teeth – are also commonly seen in patients.
Previous studies have suggested that people with developmental disabilities may experience barriers to oral care. Some recognized problems are inadequate provider training, challenging patient behaviors, treatment costs, and anxiety.
However, barriers to good oral health for Rett patients have not been specifically explored.
To address this issue, researchers from two Australian universities have now explored carers’ perceptions of access to dental care for their daughters with Rett.
An analysis was carried out on the surveys carried out by the International Rett Syndrome Phenotype Database, known as InterRett, which is a worldwide database of families with Rett patients. The surveys were collected in 2018 and included responses from 216 families in Australia and the UK
A majority of families had favorable opinions about the dental care received. Care was rated “excellent” by 43.1% of respondents and “high” by 26.4%. In addition, 24.1% of families considered the care to be “good”.
While most respondents reported having easy access to dental care, 11.1% reported difficulty getting to the clinic. A further 5.6% found it “difficult” and 8.3% “very difficult” to access healthcare.
Overall, 58.8% of families (127 families) reported no barriers to seeing a dentist. Of the 88 who reported barriers, 55 (62.5%) said “finding a dentist to treat my daughter” was a problem, while long waiting lists to see a dentist were reported by 36, 4% of caregivers.
Both of these barriers are commonly reported in studies of people with developmental disabilities seeking to access care, the researchers noted.
Other barriers were cited as: other more important issues requiring family attention (13.6%); misunderstanding by the dentist (11.4%); high costs (10.2%); and poor access to buildings (9.1%). A lack of time was reported by 6.8% of respondents, while 5.7% noted long waiting lists for treatment.
A total of 12 families said their daughters had not seen a dentist in the past three years. This was partly due to some of the barriers above, as well as additional issues, including “the dentist doesn’t understand my daughter”, reported by five families, and “my daughter has bigger issues to deal with”, as noted by three families.
Notably, cost as a barrier was cited less frequently in this study compared to previous reports involving people with intellectual disabilities, the researchers noted.
Most caregivers reported that their own level of dental anxiety, as well as that of their daughters, was very low or low to moderate.
Notably, however, daughters of caregivers who experienced low to very high anxiety received dental care less frequently compared to those of very low-anxiety caregivers. Similarly, when Rett’s patients had higher anxiety, they tended to receive less dental care.
“The presence and amount of dental fear in caregivers and patients with [Rett] seemed to influence relative dental attendance in general and for exam appointments,” the researchers wrote.
Overall, the study highlights that barriers to dental care occur in Rett patients. It is limited, however, by the fact that InterRett participants may be more proactive about dental care and have higher socioeconomic status than other families who did not participate, the team noted.
The dental care needed by Rett patients is likely underestimated by caregivers and clinicians, the team also noted, especially since patients may often be unable to communicate oral pain or other care needs. .
“This underscores the importance of recognizing the barriers to optimal access to dental care in [Rett syndrome],” they wrote. “Targeted oral health promotion at times when caregivers go to dental appointments could be beneficial. This can help reinforce their role as advocates for their daughters and increase their awareness of dental problems requiring care, as well as the importance of preventive care.
The team said further investigation was needed to “shape future efforts to identify realistic strategies to maintain and improve the oral health” of Rett’s patients.
“Future research should examine how caregiver oral health literacy affects preventive dental practices and health outcomes,” they concluded.