New Study Highlights Barriers to Dental Care for Rett Patients
Note: This story was updated May 3, 2022, to clarify that survey responses were collected from 216 families in the U.S., U.K., and Canada.
Several barriers to dental care — notably a lack of understanding by clinicians and long waitlists — were reported by caregivers in a recent study as making it more difficult to ensure good oral health for people with Rett syndrome.
The researchers noted that a caregiver’s own anxiety about dental visits also was among the barriers to good oral health care for patients.
“Dentist-related barriers and caregiver-reported anxiety may both adversely affect dental attendance for those with [Rett],” the team wrote. “Future research should explore caregivers’ beliefs and oral health literacy.”
The study, “Enablers and barriers in dental attendance in Rett syndrome: an international observational study,” led by researchers in Australia, was published in the journal Special Care in Dentistry.
Rett syndrome is a neurological disorder affecting almost exclusively females, in which autism-like features, intellectual functional declines, and communication problems are common. Oral problems, such as bruxism — tooth grinding and clenching — also are commonly observed among patients.
Previous studies have suggested that individuals with intellectual disabilities may experience barriers to oral care. Some recognized issues are inadequate training of the provider, challenging behaviors of the patient, treatment costs, and anxiety.
However, barriers to good oral health for Rett patients have not been specifically explored.
To address this, researchers from two Australian universities now explored caregivers’ perceptions on access to dental health care for their daughters with Rett.
An analysis was performed on surveys conducted 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 the U.S., Canada, and the U.K.
While most respondents reported easy access to securing dental care, 11.1% reported some difficulty getting to the clinic. An additional 5.6% found it “difficult” and 8.3% “very difficult” to access care.
Overall, 58.8% of families (127 families) reported no barriers to seeing a dentist. Among the 88 who reported barriers, 55 (62.5%) said that “finding a dentist who will treat my daughter” was an issue, whereas long waitlists to see a dentist was reported by 36.4% of caregivers.
Both of these barriers are commonly reported in studies of individuals with intellectual disabilities who seek to access care, the researchers noted.
Additional barriers were cited as: other more important issues that required the family’s attention (13.6%); a lack of understanding by the dentist (11.4%); high costs (10.2%); and poor building access (9.1%). A lack of time was reported by 6.8% of respondents, while 5.7% noted long waitlists to receive treatment.
A total of 12 families reported that their daughters had not seen a dentist in the last three years. This was in part due to some of the above barriers, as well as additional issues including “the dentist does not understand my daughter,” reported by five families, and “my daughter has more important issues to deal with,” as noted by three families.
Notably, cost as a barrier was cited less frequently in this study as compared with previous reports involving people with intellectual disabilities, the researchers noted.
Most caregivers reported that their own levels of dental anxiety, as well as their daughters’, were very low or low to moderate.
Notably, however, daughters of caregivers who did experience low to very high anxiety received dental care less frequently relative to those of caregivers with very low anxiety. Similarly, when Rett patients had higher anxiety, they tended to receive less dental care.
“The presence and amount of dental fear in caregivers of, and patients with [Rett] seemed to influence the relative dental attendance in general, and for examination appointments,” the researchers wrote.
The study overall highlights that barriers to dental care do occur among Rett patients. It is limited, however, by the fact that InterRett participants may be more proactive about dental care and have a higher socioeconomic status than other families that did not participate, the team noted.
Necessary dental care for 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 recognising barriers to optimal dental care access in [Rett syndrome],” they wrote. “Targeted oral health promotion at the times when caregivers attend dental appointments could be beneficial. This may help to solidify their role as advocates for their daughters and increase their awareness of dental conditions requiring care, as well as the importance of preventive care.”
The team said further investigation is needed to “shape future efforts to identify realistic strategies to maintain and improve the oral health” of Rett patients.
“Future research should examine the extent to which the caregivers’ oral health literacy affects dental preventive practises and health outcomes,” they concluded.