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Objective assessments of longitudinal outcome in Gilles de la Tourette’s syndrome

From Department of Medicine, University of Texas Health Science Center (Dr. Pappert), San Antonio, TX; Departments of Neurological Sciences (Drs. Goetz and Leurgans, and L. Blasucci) and Preventive Medicine (Dr. Leurgans), Rush-Presbyterian-St. Luke’s Medical Center, Chicago, IL; and Department of Neurology and G.H. Sergievsky Center (Dr. Louis), Columbia University, New York, NY.

Address correspondence and reprint requests to Dr. Eric J. Pappert, 2379 NE Loop 410, Suite 12, San Antonio, TX 78217; e-mail: smneurology{at}corridor.net

Objective: To define the long-term outcome in Gilles de la Tourette syndrome (GTS) using objective rating measures.

Background: Previous historical studies suggest spontaneous improvement of tic symptoms after adolescence, but objective longitudinal data are limited.

Methods: The authors reviewed all videotapes in their database (1978 through 1991) of children with GTS (ages 8 to 14) who were seen in their tertiary care movement disorder center and underwent a standardized 5-minute filming protocol (n = 56). Through multiple contact methods, they successfully located 36 of these patients, who are now adults (age >20 years), and recruited 31 (28 men and 3 women) to volunteer for a second videotape and in-person assessment. A blinded rater evaluated the 62 tapes and rated five tic domains: body areas involved, motor and phonic tic frequency, and motor and phonic tic severity. Using standardized GTS videotape rating scale and Wilcoxon signed-rank tests with Bonferroni correction for multiple comparisons, the authors compared the two videotapes for each tic domain as well as the composite tic disability score.

Results: Ninety percent of adult patients still had tics. Adult patients who considered themselves tic-free were often inaccurate in their self-assessment: 50% had objective evidence of tics. Mean objective tic disability diminished in comparison to childhood (mean composite tic disability score childhood 9.58 vs adulthood 7.52, p = 0.014). All domains improved by adulthood, and significant improvements occurred in motor tic severity (p = 0.008). The improvements in tic disability did not relate to medication use, as only 13% of adults received medications for tics, compared with 81% of children.

Conclusions: In GTS syndrome, tics objectively improve over time but most adults have persistent tics.

Received September 16, 1998. Accepted in final form June 16, 2003.

Presented in part at the 50th annual meeting of the American Academy of Neurology; Minneapolis, MN.

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