The prevalence of tics, tic-severity and quality of life in 50 patients with Tourette syndrome aged >50 years will be assessed.
ID
Source
Brief title
Condition
- Movement disorders (incl parkinsonism)
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
The primary outcome measure is the total tic severity score on the Dutch
version of the Yale Global Tic Severity Scale (YGTSS). The YGTSS is a
well-established, semi-structured clinician derived rating scale with
satisfactory convergent and discriminant validity and interrater agreement.
Information on tic severity is acquired for motor tics and vocal tics
separately in five dimensions: number, frequency, intensity, complexity, and
interference. These dimensions are summated and the subscale scores are
obtained. A rating of impairment is added to provide a total tic severity score
that ranges from 0 (no tics) to 55 (severe tics).
Secondary outcome
Secondary outcome measurements include general assessment of quality of life,
severity of premonitory urges and severity of comorbidity. The presence of
neuropsychiatric comorbidity will be assessed by a validated mini
neuropsychiatric interview (M.I.N.I.). If ADHD is present, severity is
measured with the Conners' Adult ADHD Rating Scales (CAARS). In case of
comorbid OCD, the Yale Brown Obsessive Compulsive Scale is administered. Autism
is measured with the Autism Spectrum Quotient. Depression will be measured
using the Beck Depression Inventory Scale. Co-occurrence of migraine will be
assessed using a semi-structured headache questionnaire.
Quality of life is measured using the Gilles de la Tourette Syndrome*Quality of
Life Scale. The GTS-QOL is a 27-item, patient-reported scale which measures
GTS-specific health related quality of life on 4 subscales (psychological,
physical, obsessional, and cognitive subscale). The GTS-QOL demonstrated
satisfactory scaling assumptions and acceptability, high internal consistency
high reliability and test-retest reliability, and supported validity. It takes
into account the complexity of the clinical picture of GTS. Health related
quality of life (HRQOL) will be assessed using the TNO-AZL questionnaire for
Adult*s HRQOL (TAAQOL). This questionnaire measures health status problems
weighted by the impact of problems on well-being on 12 multi-item scales: gross
motor functioning, fine motor functioning, cognitive functioning, sleep, pain,
social functioning, daily activities, sexuality, vitality, positive emotions,
depressive emotions and aggressiveness. Higher scores indicate a better HRQOL
(range 0-100). Scores will be compared with an age-matched Dutch reference
group provided by TNO. Psychometric performance (reliability and validity) of
the TAAQOL is satisfactory.
Background summary
Gilles de la Tourette syndrome (GTS) is a complex neuropsychiatric disorder
that is characterized by tics. Tics are brief, sudden, rapid, recurrent,
irresistible, non-rhythmic, stereotyped motor movements or sounds. Most
frequently, tics are preceded by an unpleasant somatic phenomenon that is
momentarily alleviated by performance of the tic (premonitory urge). Usually,
they have a childhood onset. At the severe end of the spectrum, tics may have a
strong impact on mental and physical health affecting social, educational and
occupational functioning (problems in obtaining partners or friends, drop out
from school, loss of work productivity). Physically, tics may lead to damage or
pain due to the overstraining of muscles. GTS is associated with a wide variety
of associated behaviors and psychopathologies, including attention deficit
hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD) and autism.
In addition, the frequency of migraine in patients with GTS is fourfold higher
than in the general population.
It is well known that tics can persist into adulthood in 33-50 % of patients.
Recent studies that studied the impact of Tourette syndrome in adult patients
showed a decreased perceived quality of life and higher levels of self-reported
depression. The mean age of patients studied in these studies was 30-35 years.
One study reported on tics in middle-aged (>50 years of age) patients that
presented for an initial evaluation at a clinic. This study by Jankovic et al
reported that the vast majority of tics presenting during adulthood represented
recurrences of childhood-onset tics. This study does not provide any prevalence
numbers, since the patients studied constituted a selected group already
referred to the clinic because of troublesome tics.
To our knowledge, there are no studies describing prevalence of tics,
tic-severity and quality of life in middle-aged and elderly patients with
Tourette syndrome.
Study objective
The prevalence of tics, tic-severity and quality of life in 50 patients with
Tourette syndrome aged >50 years will be assessed.
Study design
Cross-sectional observational study in 50 patients
Single visit for interview and video shot
Study burden and risks
There are no risks in participating in this study. The burden associated with
participation is a single visit to our hospital of 60 minutes.
The benefits of this study do not directly apply to participants, but to
younger patients. After this study we hope we will be able to inform younger
patients about the natural course of tics in Tourette syndrome at older age.
Leyweg 275
Den Haag 2545 CH
NL
Leyweg 275
Den Haag 2545 CH
NL
Listed location countries
Age
Inclusion criteria
Fulfill DSM IV criteria for Tourette syndrome
Born before January 1965
Exclusion criteria
Diagnosis of dementia
Severe psychiatric disorders (e.g. psychosis)
Aphasia
Not able to speak and/or read Dutch language
Design
Recruitment
metc-ldd@lumc.nl
metc-ldd@lumc.nl
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| CCMO | NL49125.098.14 |