Behavioral Therapy for Tourette Syndrome

Tourette syndrome (TS) is a neurodevelopmental disorder with childhood onset characterized by
the presence of chronic motor and vocal (phonic) tics. Tics typically begin between the ages
of 4 - 7 years, frequently persist, and often lead to psychosocial, physical, functional, and
academic difficulties. Epidemiological studies have shown that about 20-30% of children
exhibit tics in a classroom setting whereas the estimated prevalence of impairing cases of TS
is 1/100 - 1/1000 individuals. There is no cure for tics and a variety of behavioral and
pharmacotherapies have been used successfully to suppress tics. Comprehensive Behavioral
Intervention for Tics (CBIT) has been shown to be beneficial in several large trials as has
habit reversal training (HRT), one of its major components. In the past, it has been
suggested that only "competent and trained practitioners should administer CBIT." This
proposal challenges that concept and believes that one can establish a successful front-line
home-based CBIT treatment program that would be beneficial for the treatment of patients with
tic symptoms throughout the country.

CBIT is a safe, effective, front-line treatment for TS. Nevertheless, the investigators
emphasize the acute shortage of appropriately trained clinicians available to assist affected
individuals. Hence, in this proposal the investigators will assess the effectiveness of a
behavioral home-based, parent administered treatment by investigating at Johns Hopkins
Hospital whether the home-based digital video disc (DVD) reduces tic severity comparable to
that achieved with face-to-face treatment administered by an experienced therapist. The
investigators' confidence in the success of this project is based on prior experiences with
another childhood movement disorder, primary complex motor stereotypies. The potential
significance of this project is enormous, recognizing that home-based therapy reduces health
care costs, visits to practitioners, the need to train large numbers of therapists, and most
importantly provides direct, available care for a greater number individuals affected with
tics.

Inclusion Criteria:

- Meet criteria for TS or a chronic motor/vocal tic disorder (CTD). TS as defined by the
TS Classification Study Group, includes onset before 18 years, multiple involuntary
motor tics, one or more vocal tics, a waxing and waning course, the gradual
replacement of old symptoms with new ones, the presence of tics for more than one
year, the absence of other medical explanations for tics, and the observation of tics
by a reliable examiner. CTD, criteria are as above, except that only motor or vocal
tics are required

- Age 7-13 years, either gender

- Observable tics, achieving a minimum score > 20 for TS or > 15 for CTD on the Total
Tic Severity score of the Yale Global Tic Severity Scale (YGTSS)

- Tic symptoms must be severe enough to warrant therapy; [e] Tics are not controlled
with current medication or individuals are tic-suppressing drug naïve

- The concurrent use of other tic-suppressing medications will be permitted, if the
subject has been on a stable dose for more than six weeks and agrees to maintain a
constant dosage throughout the study; [6] The concurrent use of medication for
Attention-Deficit Hyperactivity Disorder (ADHD) or Obsessive Compulsive Disorder (OCD)
is also permitted if the participant has been on a stable dose for more than six weeks
and agrees to maintain a constant dosage throughout the study.

Participants will be included in the study if they have had less than four previous
sessions of habit reversal training. The investigators will not allow the study to
interfere with simultaneous behavioral treatment. In this study, the investigators will
assess whether caregiver-directed behavioral therapy using an instructional DVD will help
patients who would like behavioral therapy, but the patients do not live close enough to
Johns Hopkins for frequent visits.

Exclusion Criteria:

- Secondary tics

- Significant medical illness or a chronic neurological condition (i.e., seizure
disorder, developmental neurological conditions, acquired brain injuries

- Current major depression, generalized anxiety disorder, separation anxiety disorder,
psychotic symptoms (based upon clinical evaluation), pervasive developmental disorder,
autism, intellectual disability (I.Q. less than 70), anorexia/bulimia, or substance
abuse

- Individuals with significant OCD, not controlled by medication, will be excluded

- Four or more previous sessions of habit reversal training.