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More Than Half of Tourette Patients Report Financial Strain and Discrimination

NICE, France—Tourette syndrome and tic disorders exact a heavy toll on patients' ability to form relationships and succeed at school and in careers, according to findings from a web-based survey of people with the disorders presented here at the International Congress of Parkinson's Disease and Movement Disorders.

More than half of the respondents of the survey—which included 281 adults and 623 children—said they experienced some form of discrimination and financial strain.

The findings point to the need for improved diagnostic tools for earlier diagnosis and interventions targeting the educational and vocational needs of people with Tourette syndrome and tic disorders, said the lead author of the report and an independent expert.

Fifty-three percent of the adult respondents with Tourette syndrome and tic disorder had a delay of at least six years until diagnosis, said the lead author of the report, Irene Malaty, MD, FAAN, associate professor of neurology at the University of Florida. And despite the fact that approximately 30 percent of patients had tried five or more medications, nearly half of patients felt their symptoms were not adequately treated.

Sixty-three percent of children and 68 percent of adult patients said they had experienced discrimination due to the disorders, and 44 percent of the adults who responded—children weren't asked this—said they'd been hindered in developing meaningful friendships or romantic relationships. Twenty-five percent of the adult respondents reported substance abuse.

Among other findings, 83 percent of children and 76.7 percent of adults said they felt their educational success was hindered by the disorder. Forty percent of children said they had to miss school due to the disorders, 43 percent said they'd been discriminated against by teachers, and 35 percent said they weren't provided with an education that matched their abilities. Sixty-nine percent reported receiving educational accommodations.

Forty-three percent of patients reported financial strain due to the disorders, attributing it mostly to the high cost of needed services.

In the survey, patients said that neurologists diagnosed the disorder in 60 percent of the cases, much more often than other physician groups. Psychiatrists made the diagnosis 15 percent of the time and primary care physicians and pediatricians in less than 10 percent of cases.

"We would anticipate pediatricians or psychiatrists would be doing most diagnosing," Dr. Malaty said. "I found it completely fascinating that among both kids and adults, the majority were diagnosed first by a neurologist."

The survey was conducted by the Tourette Association of America.

Tamara Pringsheim, MD, FAAN, associate professor in the department of clinical neurosciences, psychiatry, pediatrics and community health sciences at the Cumming School of Medicine of the University of Calgary, Canada, said the findings dovetail with work done by her center. Dr. Pringsheim is the director of the Calgary Tourette and Pediatric Movement Disorder Clinic at the Alberta Children's Hospital.

"These results are consistent with a Canadian population-based study we performed a few years ago, which also found that individuals diagnosed with Tourette syndrome were less likely to obtain a post-secondary education, had lower household incomes, and were less likely to be employed," she said. "Interventions targeting the educational and vocational needs of people with Tourette syndrome are needed to maximize their potential at school and in the workplace."

She said the tools to help neurologists with Tourette syndrome diagnosis have recently been improved.

"As neurologists are the physicians most often making the diagnosis of Tourette syndrome, we hope that our recently published AAN guideline on the assessment and management of tics in people with Tourette syndrome and chronic tic disorders will help improve the overall standard of care for people living with Tourette syndrome."

Harvey S. Singer, MD, FAAN, professor of neurology at Johns Hopkins, said: "There is much more to Tourette syndrome than just tics. Clearly, establishing an effective therapeutic plan requires the careful assessment of tics, determining the presence of co-occurring issues, and clarifying the resulting impairment of each issue. In terms of treatment, it is essential to determine whether tics or associated problems—for example, attention deficit-hyperactivity disorder, obsessive-compulsive disorder, anxiety, mood, disruptive behaviors, or other (issues)—are causing the greatest impairment."

Drs. Malaty and Pringsheim had no disclosures.

Link Up for Related Information:

International Congress Abstract 1384: Malaty I, Shineman D, Deeb W. The impact of Tourette syndrome and tic disorders on education, occupational and personal life.