LongTerm Followup of Patients with Tourette Syndrome

1
Long-Term Follow-up of Patients with Tourette
Syndrome

• Larry Burd, PhD Jacob Kerbeshain,MD Amy Barth,
  BS Marilyn G. Klug, PhD Karilyn Avery, MD
  Becky Benz, MD
• Department of Pediatric, University of North
  Dakota School of Medicine and Health Sciences,
  Grand Forks, ND

2
Abstract

• The goal of this study was to collect prospective
  longitudinal information on the development of an
  epidemiologically defined cohort of patients with
  Tourette syndrome (J Child Neurol 2001
  16431-437).

3
Cohort established

• 1985-1986
• DSM III criteria
• Statewide Study

4
Childhood Prevalence

• 5.2 per 10,000
• Mean age 10.1 years

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Results
Thirty-nine of the 54 (72) patients were located
and interviewed. This sample was comprised of 30
males (77) and nine females (23). At the time
of our initial evaluation or entry into the study
cohort (between 1984 and 1985), the mean age was
122 months (10.1 years), with a minimum age of 35
months and a maximum age of 215 months. The mean
age at the follow-up evaluation was 274 months
(22.8 years) the youngest was 168 months, and
the oldest was 336 months. This was a 507
person-years of follow-up, with a mean follow-up
period of 13 years. The results are in the
tables.
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• Mean age at follow up
• 22.8 years

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Temporal Data on Tic Morphology from 39 Patients
with Tourette Syndrome from North Dakota at
Follow-up (Mean Age 22.8 Years) __________________
_________________________________________________
Age When Tics Peaked Mean SD Range (in
months) Total (N 35) 99.0
82.7 0 - 300 Male (n 27) 92.0
86.7 0 - 300 Female (n 8) 122.9
66.5 0 180 ____________________________________
________________________________
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_______________________________________________
Total Males Females Time of Peak
Tics N () n () n () ___________________________
____________________________________________ Morni
ng 2 (5) 1 (3) 1 (11) Noon 1 (3) 0 - 1 (11) Afte
rnoon 6 (15) 5 (17) 1 (11) Stress 6 (15) 6 (20)
0 - Other 6 (15) 5 (17) 1 (11) Unknown 18 (46) 1
3 (43) 5 (56)
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Most Common Comorbid Diagnosis at Initial
Evaluation (Mean Age 10.1 Years) and Follow-up
(Mean Age 22.8 Years) in 39 Patients with
Tourette Syndrome from North Dakota. _____________
__________________________________________________
____________ Initial Evaluation Follow-up Dia
gnosis n () n () ____________________________
_______________________________________________ To
urette syndrome 39 (100) 18 (46) ADHD 8 (21)
11 (28) Depression 4 (10) 3 (8) Seizures 6 (1
5) 1 (3) Learning Disabilities 5 (13) 4 (10) De
pression 4 (10) 3 (8) Bipolar
disorder 3 (8) 1 (3) Obsessive-compulsive 2 (5
) 3 (8) disorder
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Syndromal Severity

• Tic Severity (Global Severity Rating Scale),
  Comorbidity (Number of Comorbid Neuropsychiatric
  Conditions Identified), and Reversed Global
  Assesment of Functioning Scores at Initial
  Evaluation

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Initial Evaluation Follow-up
Mean Mean Change
() ______________________________________________
______________ Global Severity Rating Scale
(GSR) Total 3.4 1.4 2.0
(59) Male 3.4 1.6 1.8
(53) Female 3.4 0.6
2.8 (82) ______________________________
______________________________
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Initial Evaluation Follow-up
Mean Mean Change
() ______________________________________________
_______________ Comorbity Total 3.1 1.8
1.3 (42) Male 3.1 1.8 1.3
(42) Female 2.8 1.9 0.9
(32) _____________________________________________
________________
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Initial Evaluation Follow-up
Mean Mean Change
() ______________________________________________
_____ Reversed Global Assessment of Function
(GAF) Total 45.1 22.5 22.6
(50) Male 46.3 23.4 22.9
(49) Female 41.0 19.4
21.6 (53) _____________________________
_________________________________________________

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Differences in Mean Tic Severity (Global
Severity Rating Scale), Number of Comorbidities,
Reversed Global Assessment of Functioning Score,
and Composite Score at Initial Evaluation (Mean
Age 10.1 Years) and at Follow-up (Mean Age 22.8
Years) in 39 Patients with Tourette Syndrome from
North Dakota. ____________________________________
_____________________________________________ Meas
ure Mean SD Range ____________________________
__________________________________________________
___ GSR at intake 3.4 0.9 1 - 5 GSR at
follow-up 1.4 1.7 0 - 5 Comorbity at
intake 3.1 1.8 1 - 8 Comorbity at
follow-up 1.8 1.3 0 - 6 Reversed GAF at
intake 45.1 13.9 15 75 Reversed GAF at
follow-up 22.5 18.4 0 - 80 Composite Score at
intake 129.6 29.5 57 - 189 Composite Score at
follow-up 62.7 46.1 10 - 194
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__________________________________________________
________ Results of Paired t-tests (Measure) Mean
SD T Probgt/T/ ____________________
____________________________________ Differences
in GSR Scores 2.0 1.8 7.1
lt0.0001 Differences in comorbity 1.2 2.2
3.6 lt0.0005 Differences in Reversed 22.6
18.0 7.8 lt0.0001 GAF
Scores Difference in composite 66.9 51.4
8.1 lt0.0001 scores ___________________ T
he composite score is a linear combination of the
three severity measures.
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Longitudinal Course for Subjects with Tourette
Syndrome
High Severity Low
5 15 80
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Course of Tourette Syndrome

• 4 improvement per year

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Conclusions
Tourette Syndrome is a common developmental
disorder with a definable course. Based on this
information close monitoring of pharmacological
and other interventions is warranted. Long term
treatment is likely necessary for only a minority
of affected people. Strategies for management of
episodic problems in TS are needed. This would be
especially important for children six to thirteen
years of age.