More Care, More Disease

Maintaining the oral health of patients with special needs proves problematic

A patient undergoes treatment at a Tufts Dental Facilities clinic

Despite receiving oral health care twice as often as most Americans with dental insurance, people with intellectual and developmental disabilities tend to lose their teeth at an earlier age and have more severe gum disease, according to a Tufts study that takes an unprecedented look at this understudied population.

The research, published in the Journal of the American Dental Association last August, analyzed electronic patient records of nearly 5,000 intellectually and developmentally disabled adults who visited the clinics of Tufts Dental Facilities Serving Persons with Special Needs between 2009 and 2010.

“The fact that they still have a high prevalence of disease would indicate to us that there is something about this population that puts them at a higher risk for dental problems,” says the study’s lead author, John Morgan, an associate professor of public health and community service at Tufts School of Dental Medicine. Paula Minihan, an assistant professor of public health and community medicine at Tufts Medical School, is the co-principal investigator on the study.

Tufts Dental Facilities (TDF), a 36-year-old partnership between the dental school and the Massachusetts departments of Developmental Services and Public Health, is a network of seven clinics throughout the state that provides oral health care to 7,000 patients with intellectual, developmental and physical disabilities each year.

A gift from Delta Dental of Massachusetts in 2006 funded the conversion to electronic record keeping in the TDF system, allowing Morgan and his research colleagues to mine the extensive data contained in patient records. “We thought it made sense to try to assess the oral health status of such a large number of adults with intellectual disabilities because that information is very difficult to obtain anywhere else,” Morgan said.

Five million Americans live with intellectual disabilities, according to the Centers for Disease Control and Prevention (CDC). Prior to the Tufts study, which was funded by the National Institute of Dental and Craniofacial Research (NIDCR), what little was known about the oral health of people with disabilities came from surveys of Special Olympians or of those living full time in care facilities. Because Special Olympians tend to be higher-functioning and are often from wealthier families, and those living in nursing homes are usually more profoundly disabled, Morgan says neither group truly represents the intellectually and developmentally disabled population.

TDF, however, treats people of all ages with a wide range of disabilities who live in diverse settings. The study examined the dental records of 4,732 patients, ages 20 to 98, with mild, moderate and profound levels of disability. The patients live on their own, with their families, in long-term nursing homes or in state-run or state-contracted residential communities.

Morgan surmises the study represents a broad cross section of people with intellectual disabilities, but there is one important way TDF patients may differ from their peers in other states: “They all have access to dental care,” he says.

Through the public MassHealth Medicaid program, Massachusetts is among 28 states that cover dental care for adults. Twenty-two states provide no Medicaid coverage for regular, preventative dental services for adults. Even in states that provide coverage, many private dentists don’t accept Medicaid because of low reimbursement rates and cumbersome paperwork. About one third of the 5,522 licensed dentists practicing in Massachusetts accept Medicaid, according to 2009 data from the state Department of Public Health. That’s where TDF comes in. “We’re a safety net, so we do provide care for a broad profile of this population,” says Morgan.

On average, TDF patients visit the dentist four times a year. That’s about twice as often as most insured Americans, and far more often than those with no coverage. In 2008, for example, a little more than two-thirds of Americans reported seeing a dentist even once that year, according to the CDC.

Yet even though TDF patients receive regular care, the study found that they still had disproportionately high rates of decay, periodontal disease and tooth loss. The researchers’ examination of TDF dental records between April 1, 2009, and March 31, 2010, found that like most Americans, the vast majority of TDF patients—88 percent—had experienced dental decay. However, nearly a third of TDF patients had untreated cavities. (Twenty-five percent of the general population has untreated decay, according to the 2004 National Health and Nutrition Examination Survey).

The Tufts patients in the study also had a high prevalence of toothlessness. Among those over age 60, nearly 30 percent had no teeth at all. In comparison, in the same age group in the general population, the rate of complete tooth loss is 22 percent.

The Tufts patients also had dramatically more severe gum disease. More than 80 percent of TDF patients were diagnosed with periodontitis, compared to about 47 percent in the general population, according to the CDC. The disease also struck the study group earlier. While about a quarter of all adults in their 30s have gum disease, the Tufts researchers found periodontitis in more than half of TDF patients ages 20 to 39.

Prescription medications that cause dry mouth could be one reason behind this population’s poor oral health, Morgan says. For example, 33 percent of TDF patients took medication for epilepsy or seizures. This population also tends to take drugs for high blood pressure, diabetes and asthma.

Additionally, the study showed that TDF patients who live independently have the most tooth decay. Morgan suspects these patients could be opting for sugary snacks or forgetting to brush. “A person might have the freedom to live somewhat independently, but might not understand the relationship between lifestyle and its effect on the teeth,”
he says.

To determine why patients who receive so much dental care continue to experience poor oral health, Morgan and his colleagues are expanding the scope of their research. They recently surveyed 800 caregivers of TDF patients about their knowledge and attitudes about oral health. Once those results are analyzed, Morgan says, they’ll look at both studies “to come up with what we think would be a fairly strategic intervention to improve the oral health of this population.”

This story first appeared in the Fall 2012 Tufts Dental Medicine magazine.

Jacqueline Mitchell can be reached at

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