A Comprehensive Care Model for Tourette Syndrome

Exploring strategies to improve continuity of care.

Affecting as many as 300,000 children (around one in 160) in the United States, Tourette syndrome nevertheless tends to fall under the health care system’s radar. The condition is often underrecognized and can be complicated by anxiety, obsessive-compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD) and depression.

At Vanderbilt University Medical Center, David Isaacs, M.D., an adult neurologist, and Heather Riordan, M.D., a pediatric neurologist, have assembled a multidisciplinary team that is seeking designation as a Center of Excellence for Tourette syndrome. Their goal is to provide comprehensive, personalized care for pediatric and adult patients. Said Riordan, “A lot of what we are working on is raising awareness in the medical community as well as in the general public.”

The center will have multiple emphases: ensuring patients have broad treatment options, including non-pharmacologic interventions; conducting research that identifies markers for new therapeutic avenues; and offering multidisciplinary resources to ensure comprehensive care.

 Bringing Care to “No-man’s Land”

Isaacs says for most patients, symptoms attenuate greatly by around 18 years old. But for about one-third, symptoms persist into adulthood, and for them, there is often additional dropout in support from the healthcare system.

“Adult patients can find themselves in a kind of ‘no-man’s land,’ with few providers who treat the complex of conditions they often face.”

“Many of the adult patients I see with Tourette syndrome have struggled to find appropriate resources because it is often considered a pediatric syndrome. Adult patients can find themselves in a kind of ‘no-man’s land,’ with few providers who treat the complex of conditions they often face.”

Isaac’s hope is that achieving the Center of Excellence designation for Tourette syndrome will attract adult patients who may have given up long ago. “We want to show them that it’s not too late to address their tics and psychiatric comorbidities and to start feeling better.”

The Research Challenge

Tourette syndrome is associated with clear abnormalities in the cortico-striato-thalamocortical loop, but the precise pathophysiology remains poorly understood. “The biggest challenge is the phenotypic complexity,” Isaacs said. “Children and adolescents with Tourette syndrome are undergoing development, plus they frequently have concurrent conditions. It can be difficult to decipher and manage the various interrelated symptoms.”

“Children and adolescents with Tourette syndrome are undergoing development, plus they frequently have concurrent conditions. It can be difficult to decipher and manage the various interrelated symptoms.”

Isaacs and Riordan are working to isolate and study elements of the syndrome. In one study, they are examining associations between brain activity and heightened sensitivity to sensory stimuli, a common but underrecognized symptom of Tourette syndrome. Using patient questionnaires and advanced EEG techniques, they are correlating responses to questions about these sensory experiences with brain wave activity.

“Ultimately, we hope to gain insights into mechanisms underlying sensory symptoms and find a candidate marker that has diagnostic, prognostic, and/or therapeutic value,” Isaacs said.

Expanding Treatment Options

The Vanderbilt team recently added occupational therapist Lisa Gelfand to deliver Comprehensive Behavioral Therapy for Tics (CBIT), which is gaining traction as an effective alternative to medications for many with Tourette syndrome. CBIT is a validated therapy that teaches patients to manage their tics through relaxation techniques and developing competing responses. It also involves enhanced awareness of situations that exacerbate tics.

Isaacs says CBIT is one component of a multidisciplinary program involving neurologists, psychiatrists, psychologists, pharmacists, educational specialists, nurses, social workers and researchers — all coordinating care. “A neurologist may be prescribing a medication for the tics and a psychiatrist is simultaneously recommending another for depression. It really helps to have the two on the same team in dialogue,” Isaacs said.