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The Impact of Tourette Syndrome in Adults: Results from the Tourette

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Community Ment Health J (2013) 49:110–120
DOI 10.1007/s10597-011-9465-y
ORIGINAL PAPER
The Impact of Tourette Syndrome in Adults: Results
from the Tourette Syndrome Impact Survey
Christine A. Conelea • Douglas W. Woods • Samuel H. Zinner
Cathy L. Budman • Tanya K. Murphy • Lawrence D. Scahill •
Scott N. Compton • John T. Walkup
Received: 30 December 2010 / Accepted: 17 October 2011 / Published online: 4 November 2011
Ó Springer Science+Business Media, LLC 2011
Abstract Chronic tic disorders (CTD) are characterized
by motor and/or vocal tics. Existing data on the impact of
tics in adulthood is limited by small, treatment-seeking
samples or by data aggregated across adults and children.
The current study explored the functional impact of tics in
adults using a nationwide sample of 672 participants with a
self-reported CTD. The impact of tics on physical, social,
occupational/academic, and psychological functioning was
assessed. Results suggested mild to moderate functional
impairment and positive correlations between impairment
and tic severity. Notable portions of the sample reported
social or public avoidance and experiences of discrimina-
tion resulting from tics. Compared to previously reported
population norms, participants had more psychological
difficulties, greater disability, and lower quality of life. The
current study suggests that CTDs can adversely impact
functioning in adults and highlights the need for clinical
C. A. Conelea
D. W. Woods (&)
Department of Psychology, University of Wisconsin-Milwaukee,
2441 E. Hartford Ave, Garland Hall Rm 224, Milwaukee,
WI 53211, USA
e-mail: dwoods@uwm.edu
Present Address:
C. A. Conelea
Brown University Medical School and Rhode Island Hospital,
Providence, RI, USA
S. H. Zinner
Center on Human Development and Disability,
University of Washington, Seattle, WA, USA
S. H. Zinner
Seattle Children’s Hospital, Seattle, WA, USA
C. L. Budman
Hofstra University School of Medicine, New York, NY, USA
123
•
interventions and systemic efforts to address tic-related
impairments.
Keywords Functional impact
Tic
Tourette

Quality of life
Introduction
Chronic tic disorders (CTD), including Tourette Syndrome
(TS), are childhood-onset disorders characterized by the
presence of motor and/or vocal tics for a minimum duration
of 1 year (American Psychiatric Association 2000). The
prevalence of TS in adults is thought to be about 0.5 per
10,000 (Burd et al. 1986), which is a decline from the
estimated childhood prevalence of 10–30 per 10,000
(Scahill et al. 2001). Data on the course of TS is somewhat
T. K. Murphy
Department of Pediatrics and Psychiatry, University of South
Florida, Tampa, FL, USA
L. D. Scahill
Yale Child Study Center, Yale School of Nursing,
New Haven, CT, USA
S. N. Compton
Department of Psychiatry and Behavioral Sciences,
Duke University Medical Center, Durham, NC, USA
S. N. Compton
Department of Psychology: Social and Health Sciences,
Duke University Medical Center, Durham, NC, USA
J. T. Walkup
Weill Cornell Medical College and New York-Presbyterian
Hospital, New York, NY, USA
Community Ment Health J (2013) 49:110–120
contradictory, largely due to differing operational defini-
tions of remission (Bloch and Leckman 2009). It is gen-
erally agreed that TS follows a remitting course, based on
prospective data showing attenuation of tic frequency and
severity by adolescence or adulthood for many affected
individuals (De Groot et al. 1994). Nevertheless, some
retrospective and objective longitudinal research suggests
that at least one-third of individuals with TS may still have
tics in adulthood (Bruun and Budman 1992). Although the
degree to which TS symptoms remit over time is unclear,
the fact remains that many individuals diagnosed with TS
in childhood continue to suffer from chronic tics in
adulthood.
Although limited, existing data on the functional impact
of TS in adulthood provide some evidence that adults with
tics may experience impairment across several domains.
Research suggests that the vast majority of adults with TS
feel that tics interfere with their life (Erenberg et al. 1987).
Compared to the general population, adults with TS have
higher social anxiety, depression, and obsessionality
(Robertson et al. 1993), experience higher unemployment
(Meyers 1988); and report a significantly worse quality of
life (Elstner et al. 2001). Many report experiencing social
difficulties, such as problems in dating and in making and
keeping friends as well as social and occupational dis-
crimination (Champion et al. 1988). TS may also be
associated with various physical consequences, including
musculoskeletal or neuropathic pain arising from tic per-
formance, tissue damage resulting from tic repetition (e.g.,
stress fractures), or injury secondary to tic performance,
such as striking an object when performing a tic (Fusco
et al. 2006).
Although the existing research suggests that TS can be
impairing, findings come from small treatment-seeking
samples (e.g., N = 90; Elstner et al. 2001), limiting gen-
eralizability. Clinic-based samples may exclude adults with
mild tics, those who lack treatment opportunities due to
financial or geographic constraints, or those adults who
received unsuccessful treatment in childhood and have
since refrained from seeking clinical care. Moreover,
research examining TS symptoms in large samples has
tended to combine adult and child data (Bornstein et al.
1990), making it difficult to ascertain functional impair-
ment in adults alone. An enhanced understanding of the
impact of TS on adults would improve existing treatment
efforts and guide future intervention development.
To address these limitations, researchers in other areas
have increasingly utilized Internet sampling procedures to
maximize sample size and enhance generalizability of
results. For example, Woods et al. (2006) examined the
functional impact of trichotillomania in 1,697 individuals
using an anonymous Internet-based survey and demon-
strated that the disorder can significantly impact social,
111
psychological, academic, and occupational functioning.
Although data collected via the Internet could be of ques-
tionable validity, research comparing data collected in
person versus over the Internet has demonstrated that
results are similar across administration formats, are con-
sistent with results from studies using traditional method-
ology, and are not adversely impacted by repeat or false
responders (Gosling et al. 2004; Wetterneck et al. 2006).
The current study sought to address the gaps and limi-
tations in the adult TS literature by examining the clinical
characteristics and functional impact of CTD in a large
sample using Internet sampling methods. Given the
inherent limitations of Internet-based research, the current
study was conceptualized as an opportunity to collect
preliminary data and generate hypothesis in an attempt to
gain insights into the impact of CTD in adults and to guide
future research employing more traditional methodology.
Methods
Participants
Participants were recruited through a link posted on the
Tourette Syndrome Association (TSA) home page (http://
www.tsa-usa.org). In addition, recruitment emails directing
participants to the survey were sent by the TSA to its
patient members, and a study announcement was placed in
a TSA newsletter.
A total of 1,216 adults (age 18 years and older) con-
sented to participate and 970 answered at least one question
on the survey. Participants were included in data analyses
if they 1) reported being formally diagnosed with any of
three CTD, including Tourette Syndrome, Chronic Motor
Tic Disorder, and Chronic Vocal Tic Disorder, and 2)
reported an onset of tics before the age of 18. Of those who
answered at least one question, 286 did not report a formal
TS or other CTD diagnosis and 14 did not report a tic onset
before age 18. A total of 672 participants met inclusion
criteria.
Materials
Tourette Syndrome Impact Survey (TSIS) The TSIS was
developed in multiple stages. First, the authors modeled the
TSIS format and structure upon the Trichotillomania
Impact Survey, an Internet-based survey designed to
examine similar research questions in a different popula-
tion (Woods et al. 2006). Next, the first two authors
modified survey questions, conceived new questions spe-
cifically targeting areas of interest, and selected standard
measures for inclusion. The survey was then sent to the
other authors, who are TS experts, for suggestions and
123
112
feedback regarding survey content. Revisions were com-
pleted based on this feedback. Following final approval by
all authors, the TSIS was posted on Survey Monkey (http://
www.surveymonkey.com), an Internet based survey
administration program. A link to the survey was placed on
the TSA homepage.
The TSIS (available from the second author) assessed
basic demographics, including age, ethnicity, income,
marital status, and education; self-reported diagnoses of
psychiatric disorders; and the age of tic onset. The ‘‘impact
section’’ of the survey included questions asking about the
impact of tics on various domains of functioning, including
physical (e.g., ‘‘Have you ever had tics that caused pain or
physical damage to you?’’), social (e.g., ‘‘In the last
12 months, how much did your tics interfere with your
social life?’’), occupational (e.g., ‘‘In the last 12 months,
how much do you think tics interfered with your ability to
work?’’), academic (e.g., ‘‘In the last 12 months, how much
do you think tics interfered with your academic life?’’), and
emotional (e.g., ‘‘Do you feel different or abnormal
because of your tics?’’). Efforts to cope with premonitory
urges or to reduce tics by using tobacco, alcohol, and
illegal substances were assessed (e.g., ‘‘Do you use illegal
drugs to reduce tics?’’). Participants were also asked
whether they had encountered discrimination as a result of
their tics (e.g., ‘‘Have you ever been treated differently
because of your tics?’’, ‘‘Have you ever been fired from a
job because of your tics?’’). The survey also included
several standardized measures to assess other domains of
functioning, as described below.
Yale Global Tic Severity Scale (YGTSS; Leckman et al.
1989) The YGTSS was originally designed as a clini-
cian-rated, semi-structured interview to assess tic severity
over the previous week. The YGTSS produces separate
severity ratings for motor and vocal tics and an overall
score of tic severity. As an interview-based measure, the
YGTSS has demonstrated good convergent and discrimi-
nant validity and interrater reliability (Leckman et al.). For
the purposes of the current study, the YGTSS was modified
to fit a self-report format. Participants identified tics present
in the previous week and rated the number, frequency,
intensity, complexity, and interference of motor and vocal
tics separately. Each of these domains was rated on a 0- to
5-point scale, with higher scores indicating greater severity
within each of the noted domains. Item scores were sum-
med, yielding a total severity score ranging from 0 to 50 for
which motor and vocal subscale scores each ranged from 0
to 25. Composite scores were created for the domains of
number, frequency, intensity, complexity, and interference
by summing the items for each domain across the motor
and vocal subscales.
123
Community Ment Health J (2013) 49:110–120
Depression Anxiety Stress Scale 21-Item Version (DASS-
21; Lovibond and Lovibond 1995) The DASS-21 is a
21-item self-report measure consisting of three empirically
derived factors: depression, anxiety, and stress. Each factor
scale consists of 7 items describing negative emotional
symptoms rated according to the extent to which the
symptom was experienced during the past week. Items are
rated on a 4-point Likert scale ranging from 0 (‘‘Did not
apply to me at all’’) to 3 (‘‘Applied to me very much or
most of the time’’). Items from each scale are summed and
multiplied by 2, yielding a range of possible scores from 0
to 42, with higher scores indicating greater frequency of
symptoms. The DASS-21 has been found to have good
internal consistency (a = 0.92–0.97) and validity (a =
0.55–0.85) in community and clinical samples (Antony,
Bieling, Cox, Enns, & Swinson, 1998).
Sheehan Disability Scale (SDS; Leon et al. 1997) The
SDS is a 3-item scale that measures functional disability in
work/school, social, and family life. Items are rated
according to the extent to which symptoms disrupt func-
tioning in each domain on a 10-point Likert scale ranging
from 0 (‘‘Not at all’’) to 10 (‘‘Extremely’’). Items can be
summed to yield a global functional impairment score
ranging from 0 to 30. Higher scores are indicative of
greater disability. The scale has demonstrated good internal
consistency (a = 0.89) and satisfactory construct validity.
Perceived Quality of Life Scale (PQOL; Patrick et al. 1988,
2000) The PQOL is a 19-item self-report measuring the
perceived quality of one’s life and is based on Maslow’s
human needs theory and in-depth interviews with adults of
varying levels of disability and wellness. The measure
yields a total score and three empirically derived subscores
measuring satisfaction with physical, social, and cognitive
health and well-being. Items are rated on an 11-point Likert
scale ranging from 0 (‘‘extremely dissatisfied’’) to 10
(‘‘extremely satisfied’’). The scale has demonstrated good
internal consistency (a = 0.88–0.91) and convergent
validity (0.70; Patrick et al. 2000). A population mean/
median of 7.5 has been established, with lower scores
indicating greater dissatisfaction with quality of life
(Patrick 1992).
Procedure
Data Collection
The survey was posted online for 8 consecutive months
(March 2008–November 2008). The first page of the sur-
vey was an informed consent document, which informed
participants that the purpose of the study was to examine
the impact of TS and other CTD on the lives of adults age
Community Ment Health J (2013) 49:110–120
18 years or older. Participants gave their consent to par-
ticipate by checking an item that read, ‘‘Yes, I agree to
participate’’ at the bottom of the informed consent page.
The entire survey took approximately 60 min to complete.
Survey responses were automatically stored on a password
protected account on http://www.surveymonkey.com. At
the end of the data collection phase, responses were
downloaded and transferred into a statistical program
(SPSS software, version 16.0; SPSS Inc., Chicago, IL). To
ensure participant anonymity, computer IP addresses were
not collected. An attempt to identify repeat responders was
conducted by searching for respondents who matched on
several key demographic variables (gender, age, ethnicity,
income, marital status, number of children, education). Of
the participants who met inclusion criteria, none were
identified as repeat responders.
The version of the YGTSS used in the current study
included open responses wherein participants could iden-
tify simple or complex motor or vocal tics that were not
already listed in the measure. All open responses were
examined by two advanced graduate student coders with
previous experience administering the YGTSS. Coders
separately examined each open response to determine if
(a) the item listed qualified as a tic and if (b) the tic fit into
an already existing category. Tics were recoded in cases
where both coders agreed on an appropriate categorization.
Reported tics that clearly did not fit into another category
were designated as ‘‘other’’ tics, and those that did not
seem to qualify as tics were deleted. If coders disagreed on
classification of a particular tic, the second author was
asked to code the tic and served as the ‘‘tie breaker.’’
Analytic Strategy
Study analyses were conducted with the goal of describing
the entire sample (N = 672) across several domains. To
determine if impairment was related to tic severity (defined
as YGTSS total tic score), Pearson’s correlation coeffi-
cients were calculated for interval data and point-biserial
correlation coefficients were calculated for dichotomous
variables (i.e., yes/no questions). Finally, regression anal-
yses were conducted to determine if particular aspects of
tic severity predicted impairment. Measures with missing
data were excluded from analyses.
Approval and Disclosures
The current study was approved by the University of
Wisconsin-Milwaukee Institutional Review Board. All
authors certify responsibility for this manuscript. Relevant
conflict of interest disclosures include research funding and
speaking honoraria from the TSA for other tic-related
research (DW, LS, SC, JW); authorship royalties from
113
Context Press, Guilford Press, Oxford University Press,
and Springer Press (DW); and consultation to Eli Lilly
(CB), Bristol-Myers Squibb (LS), Neuropharm (LS),
Boehringer-Ingelheim (LS), and Shire Pharmaceuticals
(LS).
Results
Basic Demographics Basic demographic data are pre-
sented in Table 1. Approximately half of the sample
reported being diagnosed with one or more additional
psychiatric disorders. The most commonly reported psy-
chiatric disorders were Obsessive Compulsive Disorder
(OCD; 34.5%, N = 232), mood disorders (27.8%, N =
187), Attention Deficit Hyperactivity Disorder (ADHD;
22.8%, N = 153), and other non-OCD anxiety disorders
(22.6%, N = 152).
Current tic Symptoms The overall sample reported a
moderate level of tic severity, as indicated by a mean
YGTSS Total Tic Score of 22.2 (SD = 10.4; N = 574),
which is slightly lower than the scores reported for samples
of treatment-seeking adults (e.g., 23.0; Verdellen et al.
2007). Motor tics were reported to be of greater severity
than vocal tics (Total Motor Tic Score: mean = 13.2,
SD = 5.3; Total Vocal Tic Score: mean = 8.9, SD = 6.7).
The measure demonstrated good internal validity across all
subscales (a = 0.89) and across all motor (a = 0.85) and
vocal (a = 0.92) subscales.
Impact of Tics The impact of tics was assessed across 4
domains: physical impact, social interference, occupa-
tional/academic interference, and psychological interfer-
ence. Global functioning and quality of life were also
evaluated.
Physical Impact The majority of respondents reported
having had at least one tic that had caused pain or physical
damage to self (60.0%, N = 403). A significant correlation
was found between an affirmative response and tic severity
(rpb = 0.31, P \ 0.000). When asked if they had ever been
hospitalized or sought urgent medical attention for tics or
for physical/psychological damage caused by tics, 12.8%
(N = 86) responded ‘‘yes,’’ and this response was signifi-
cantly correlated with tic severity (rpb = 0.17, P \ 0.000)
Social Interference Participants rated the degree to
which tics interfered with various aspects of social func-
tioning in the past 12 months (see Table 2). Participants
reported mild interference for all items. Large portions of
the sample reported avoidance of specific settings and
activities as a result of tics. A significant positive correla-
tion between item responses and tic severity was found for
almost all items.
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Table 1 Demographic characteristics

Table 1 continued
Characteristics Portion of sample
(N = 672) Characteristics Portion of sample
(N = 672)
Gender, % (N)
Age of tic onset, mean, (SD) 7.3 (3.0) (N = 551)
Male 59.4% (N = 399)
Reported having been formally diagnosed 98.1% (N = 659)
Female 40.5% (N = 272) with TS, % (N)
Unspecified 0.1% (N = 1) Reported having been formally diagnosed 30.8% (N = 207)
Age, mean (SD) 35.5 (SD = 13.3) with CMTD, % (N)
Range 18–77 Reported having been formally diagnosed 19.8% (N = 133)
Ethnicity, % (N) with CVTD, % (N)
White/Caucasian 89.6% (N = 602) Reported having been formally diagnosed 49.1% (N = 330)
with another psychiatric disorder, % (N)
African American 1.5% (N = 10)
Hispanic/Latino 3.1% (N = 21) Modal data are bolded
Asian 1.6% (N = 11)
Native American or Alaskan Native 0.9% (N = 6)
Native Hawaiian or other Pacific Islander 0.3% (N = 2) Occupational/Academic Interference Of those who held
Multi-racial 1.0% (N = 7) a job within the past 12 months (N = 461), participants
Other 1.3% (N = 9) reported that tics mildly interfered with work productivity
Unspecified 0.6% (N = 4) and co-worker relationships in the past year, and interfer-
Education, % (N) ence was significantly correlated with tic severity (see
Did not graduate from high school 3.7% (N = 25)
Table 2). When asked how many days that productivity
High school/GED 35.4% (N = 238)
was impacted by tics, participants reported an average of
15.4 (SD = 53.7, median = 0, mode = 0) days of
Tech college/Assoc. 12.4% (N = 83)
decreased work productivity in the last year, although this
BA/BS 25.7% (N = 173)
varied greatly across the sample (range = 0–365). In the
Master’s 15.5% (N = 104)
previous 12 months, participants reported missing an
Doctoral 6.5% (N = 44)
average of 0.67 days of work due to tics (SD = 2.7,
Unspecified 0.7% (N = 5)
median = 0, mode = 0, range = 0–30), being late or tardy
Annual household income, % (N)
for work due to tics an average of 1.8 days (SD = 13.8,
\$9,999 8.9% (N = 60)
median = 0, mode = 0, range = 0–200), and taking
$10,000–19,000 6.2% (N = 42)
unscheduled breaks because of tics an average of 3.1 days
$20,000–29,000 7.1% (N = 48)
(SD = 3.6, median = 1, mode = 1, range = 1–11).
$30,000–49,000 16.4% (N = 110)
$50,000–75,000 15.2% (N = 102) Although only a small portion of the sample reported
[$75,000 39.0% (N = 262) ever quitting a job because of tics (7%, N = 47), relatively
Unspecified 7.1% (N = 48) larger numbers reported failing to pursue job advancement
Annual personal income, % (N) (12.6%, N = 85) and avoiding job interviews (11.9%,
\$9,999 25.6% (N = 172) N = 80) because of tics. Quitting a job was significantly
$10,000–19,000 10.4% (N = 70) correlated with tic severity (rpb = 0.24, P \ 0.000), as
$20,000–29,000 10.6% (N = 71) were failure to pursue job advancement (rpb = 0.21,
$30,000–49,000 16.5% (N = 111) P \ 0.000) and avoidance of job interviews (rpb = 0.22,
$50,000–75,000 12.6% (N = 85)
P \ 0.000).
[$75,000 16.2% (N = 109)
A total of 221 (32.9%) of participants attended school at
Unspecified 8.0% (N = 54)
any point in the past 12 months. Overall, these participants
reported mild academic interference due to tics (see
Marital status, % (N)
Table 2), and interference was significantly correlated with
Single/never married 43.3% (N = 291)
tic severity. Academic productivity was reported to be
Currently married 45.4% (N = 305)
decreased for an average of 14.2 days in the previous year
Separated 1.8% (N = 12)
(SD = 44.1, median = 0, mode = 0). Similar to occupa-
Divorced 7.4% (N = 50)
tional productivity, the number of days adversely impacted
Widowed 1.2% (N = 8)
by tics varied considerably in terms of academic produc-
Unspecified 0.9% (N = 6)
tivity (range = 0–365).

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Community Ment Health J (2013) 49:110–120 115

Table 2 Functional interference caused by tics in the past 12 months

Domain Item mean or percent Correlation with YGTSS
endorsed total tic score

Social interference
Interference with social life, mean (SD)a 3.7 (2.6) 0.50 
Interference with family relationships, mean (SD) a
2.2 (2.2) 0.39 
Interference with non-familial relationships, mean (SD) a
3.1 (2.6) 0.46 
Interference with romantic relationships, mean (SD) a
2.8 (2.7) 0.32 
Interference with private leisure, mean (SD) a
3.6 (2.7) 0.46 
Interference with home management, mean (SD)a 2.9 (2.5) 0.45 
Avoided going on vacation because of tics, % 13.9% 0.05
Avoided social events or entertainment activities because of tics, % 40.7% 0.11*
Avoided public places because of tics, % 38.4% 0.11 
Avoided group activities because of tics, % 42.8% 0.07
Occupational interference
Interference with ability to work, mean (SD)a 2.7 (2.3) 0.45 
Interference with co-worker relationships, mean (SD) a
2.3 (2.1) 0.39 
Academic interference
Interference with academic life, mean (SD)a 3.1 (2.5) 0.42 
YGTSS Yale Global Tic Severity Scale
* Correlation is significant at P = 0.05
 
Correlation is significant at P B 0.01
a
Rated on a 1 (mild interference) to 9 (severe interference) point scale. A score of C4 indicated moderate interference

As a result of tics, participants reported missing an
average of 1.9 (SD = 6.5, median = 0, mode = 0,
range = 0–60) classes, being late for an average of 1.3
(SD = 5.2, median = 0, mode = 0, range = 0–50) clas-
ses, and taking unscheduled breaks in the school day an
average of 4.7 days (SD = 20.9, median = 0, mode = 0,
range = 0–250) in the past 12 months. A small portion of
the sample reported dropping out of school at some point
because of tics (9.4%, N = 63), and a comparatively larger
portion reported not pursuing additional education due to
tics (13.1%, N = 88). Dropping out of school (rpb = 0.25,
P \ 0.000) and not pursing more school (rpb = 0.25,
P \ 0.000) were significantly correlated with tic severity.
Psychological Interference The impact of tics on psy-
chological functioning was assessed via questions
addressing participants’ emotional reaction to having tics
and their perceived influence of tics in the development of
other emotional problems. Participants were also asked
about their use of alcohol/drugs to control or cope with TS
symptoms. Finally, DASS-21 scores were used to examine
current levels of depression, anxiety, and stress across the
sample.
A minority of the sample reported using alcohol,
tobacco, or illegal substances in an attempt to reduce tic
frequencies, premonitory urges, and adverse emotional
reactions occurring as a consequence of tics (e.g., sadness,
embarrassment, shame; see Table 3). The use of tobacco,
alcohol, and illegal drugs to reduce tics was significantly
correlated with tic severity.
The majority of respondents reported feeling different or
abnormal because of tics (see Table 3), and a lesser per-
centage reported that tics made them feel special or unique
in a good way. Regarding the lasting emotional impact of
tics, the majority thought that tics led to the development of
another emotional disorder. Scores on the DASS-21 indi-
cated that the sample reported higher levels of depression,
anxiety, and stress than the general population (Antony
et al. 1998) but lower levels than those observed in other
clinical populations, such as those with trichotillomania
(Woods et al. 2006). All three DASS-21 scales were sig-
nificantly correlated with tic severity, suggesting that
increased tic severity is associated with increases in psy-
chological difficulties.
Global Functioning and Quality of Life The mean score
on the SDS was 8.8 (SD = 6.9), representing a moderately
high level of global perceived disability. A significant
correlation between SDS scores and tic severity was found
(r = 0.49, P \ 0.000), suggesting that increased tic
severity is associated with increased overall disability. In
terms of quality of life, respondents had a mean score of
6.6 (SD = 1.7) on the PQOL, which is indicative of greater
dissatisfaction than well adults (mean = 8.4), adults with

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Table 3 Psychological interference caused by tics

Domain Item mean or percent Correlation with YGTSS
endorsed total tic score

Felt different/abnormal because of tics, % 68% 0.20 

Felt unique/special because of tics, % 28.9% 0.07
Felt tics directly contributed to the development of another emotional disorder, % 59.2% 0.22 
Using tobacco to reduce tics, % 6.8% 0.23*
Using tobacco to reduce premonitory urge, % 6.4% 0.18
Using tobacco to cope with tic consequences, % 4.2% -0.02
Using alcohol to reduce tics, % 8.5% 0.17*
Using alcohol to reduce premonitory urge, % 6.7% 0.19*
Using alcohol to cope with tic consequences, % 8.9% 0.09
Using illegal drugs to reduce tics, % 5.7% 0.27*
Using illegal drugs to reduce premonitory urge, % 5.1% 0.25
Using illegal drugs to cope with tic consequences, % 3.1% 0.06
DASS-21 depression score, mean (SD) 8.6 (5.2) 0.25 
DASS-21 anxiety score, mean (SD) 4.2 (4.2) 0.34 
DASS-21 stress score, mean (SD) 5.3 (5.2) 0.39 
YGTSS Yale Global Tic Severity Scale, DASS-21 Depression Anxiety Stress Scale 21-Item Version
* Correlation is significant at P = 0.05
 
Correlation is significant at P B 0.01

other chronic illnesses (mean = 7.6), and adults with ter-
minal cancer (mean = 7.0; Patrick et al. 2000). Tic
severity was significantly negatively correlated with the
PQOL total score (r = -0.21, P \ 0.000), as well as with
the physical (r = -0.23, P \ 0.000), social (r = -0.19,
P \ 0.000), and cognitive (r = -0.14, P \ 0.000) sub-
scales, suggesting that increased tic severity is associated
with decreased quality of life.
Discrimination Participants were asked whether or not
they had ever experienced various instances of discrimi-
nation because of tics (see Table 4). A large majority
(68.0%) reported having been treated differently by others,
and notable portions of the sample indicated that they had
been treated in a rude or discriminating manner by a
business, asked to leave a school setting, and/or asked to
leave a public place. All of the discrimination items were
significantly positively correlated with tic severity, sug-
gesting that increased tic severity may put individuals at a
higher risk of encountering discrimination as a result of
tics.
Dimensions of Tic Severity Given the findings that tic
severity was significantly correlated with the SDS total
score, the PQOL total score, and the DASS-21 subscales,
we were interested in determining whether particular
dimensions of tic severity best predicted scores on these
measures. Composite scores for each of the domains of the

Table 4 Discrimination experienced as a result of tics

Item Percent Correlation with YGTSS
endorsed total tic score

Treated differently 68.0 0.18 

Asked to leave a public place 17.3 0.29 
Fired from job 8.9 0.19 
Asked to leave a school setting 20.4 0.19 
Discriminated against or treated rudely by a business 30.8 0.37 
Discriminated against or treated rudely by a landlord, neighbor, or tenant association 11.9 0.22 
YGTSS Yale Global Tic Severity Scale, DASS-21 Depression Anxiety Stress Scale 21-Item Version
 
Correlation is significant at P B 0.01

123
Community Ment Health J (2013) 49:110–120 117

0.14

0.01
YGTSS (number, frequency, intensity, complexity, inter-

DR2

–
–
ference) were entered stepwise into separate multiple

DASS-21 stress subcale

0.30*

0.14*
regression equations with SDS total score, PQOL total

0.12

0.01
0.09
score, and DASS-21 depression score, DASS-21 anxiety

b
score, and DASS-21 stress score as dependent variables.

SE B

0.11

0.11
Results are presented in Table 5. Analyses revealed that

–
–
the YGTSS interference score was a significant predictor
0.66

0.31

YGTSS Yale Global Tic Severity Scale, SDS Sheehan Disability Scale, PQOL Perceived Quality of Life, DASS-21 Depression Anxiety Stress Scale 21-Item Version
of all dependent variables, accounting for 37% of the
B

–
–
variance on the SDS, 9% of the variance on the PQOL,
0.14

0.01
2
DR

11% of the variance on the DASS-21 depression scale,

–
–
–
DASS-21 anxiety subscale

14% of the variance on the DASS-21 anxiety scale, and

0.33*

0.10*
-0.02
-0.08
-0.03
14% of the variance on the DASS-21 stress scale. Other
dimensions of tic severity significantly predicted scores on
b

the PQOL and the DASS-21 subscales above and beyond

SE B

0.09

0.08

interference, although the additional variance accounted

–
–
–

for was generally small (approximately 1%).

0.59

0.16
B

–
–
–

Next, we were interested in examining whether motor

or vocal tics had a greater impact on these measures of
0.11
0.01

0.01
2
DR
DASS-21 depression subscale

functioning. Based on the results of the initial models,

separate multiple regression analyses were used to exam-
0.37*
-0.23*

0.16*
0.00

0.00

ine whether the motor or vocal scores of the previously

b

established significant predictor variables best predicted

SE B

the dependent variables. For example, when the SDS total

0.15
0.15

0.18
–

score was the dependent variable, only YGTSS motor

Table 5 Linear regressions between dimensions of tic severity and SDS, PQOL, and DASS-21 scores

interference and YGTSS vocal interference scores were

0.84
-0.47

0.37
–

entered stepwise as independent variables. Results of these

B

analyses are presented in Table 6. Results indicated that

0.09
0.01
2
DR

motor interference best predicted the dependent variable in

–
–
–

each of the analyses. Motor interference accounted for

-0.41*
0.14*
-0.04
0.02
0.06

35% of the variance on the SDS, 8% of the variance on the

PQOL, 9% of the DASS-21 depression scale, 14% of the
b
PQOL total score

DASS-21 anxiety scale, and 14% of the DASS-21 stress

SE B

0.05
0.04

scale. The other dependent variables entered into the

–
–
–

models were either nonsignificant or accounted for only a

-0.31
0.10

small amount of variance above and beyond motor

–
–
–
B

interference.
0.37
2
DR

–
–
–
–
0.61*

Discussion
-0.07
-0.06
-0.04
-0.04
b
SDS total score

Previous research on the impact of TS in adulthood doc-

SE B

* Correlation is significant at P \ 0.05

0.11

uments functional impairment, but studies have been

–
–
–
–

limited by small treatment-seeking samples, aggregated

1.82

samples of children and adults, and problems recruiting

B

–
–
–
–

large samples of adults with TS (perhaps due to reductions

YGTSS composite score

in TS prevalence in adulthood). The current study sought

to address these limitations by assessing demographic
characteristics and TS related functional impairment in a
large community sample of adults using Internet survey
Interference
Complexity
Frequency

methodology. Although this methodology inherently pre-

Intensity
Number

sents several limitations, the present investigation is, to our

knowledge, the largest sample of adults with CTDs who

123
118 Community Ment Health J (2013) 49:110–120

0.14
0.01

YGTSS Yale Global Tic Severity Scale, SDS Sheehan Disability Scale, PQOL Perceived Quality of Life, DASS-21 Depression Anxiety Stress Scale 21-Item Version, n/a variable was not
have responded to questions about the functional impact of

DR2

n/a
n/a

n/a
n/a
n/a
n/a
–
–
TS. The present investigation suggests that in adults (1)
DASS-21 stress subcale

-0.05
individuals with chronic tics experience mild to moderate

0.29*
0.13*

0.00
n/a
n/a

n/a
n/a
n/a
n/a
b adverse impact on various domains of functioning; (2)
functioning is generally correlated with tic severity, such
SE B

0.16
0.16
that higher tic severity is associated with greater impair-
n/a
n/a

n/a
n/a
n/a
n/a
–
–
ments in functioning across multiple domains; (3) a sub-
0.95
0.43

stantial portion of individuals with CTDs are likely to

n/a
n/a

n/a
n/a
n/a
n/a
B

–
–
report avoiding public or social settings because of their
0.14

0.01
2

tics; (4) many people with tics are treated differently by

DR

n/a
n/a
n/a
n/a
n/a
n/a
DASS-21 anxiety subscale

–
others or experience some form of discrimination attrib-
0.34*

0.12*
utable to their tics; (5) psychological difficulties, global
0.08

0.06
n/a
n/a
n/a
n/a
n/a
n/a
B

disability, and quality of life dissatisfaction are greater in

those with TS as compared to the general population; and
SE B

0.14

0.11
n/a
n/a
n/a
n/a
n/a
n/a

(6) tic interference (as measured by the YGTSS), particu-

–

larly interference associated with motor tics, is the tic

1.08

0.30
n/a
n/a
n/a
n/a
n/a
n/a

dimension that best predicts disability, quality of life, and

B

psychological difficulties. These data are consistent with

0.09
0.02

0.01
2
DR

n/a
n/a

n/a
n/a

previous research suggesting that tics can impact people’s

–

–
–
DASS-21 depression subscale

lives in detrimental ways (Erenberg et al. 1987; Elstner

Table 6 Linear regressions between motor and vocal dimensions of tic severity and SDS, PQOL, and DASS-21 scores

-0.16*

et al. 2001) and highlight the notion that the impact of tics
0.21*
0.29*

0.08
0.09
n/a
n/a

n/a
n/a

can last across the lifespan.

b

One interesting finding concerns perceived quality of

-0.07
SE B

life. The current sample reported more dissatisfaction than

0.21
0.29

0.22
n/a
n/a

n/a
n/a
–
–

healthy adults and comparable (or increased) dissatisfac-

tion than adults with other chronic conditions (Patrick et al.
-0.54
0.84
1.14

n/a
n/a

n/a
n/a

2000). The improvement of quality of life for all people

B

–
–

has been stated as a major public health goal by the US

0.08
0.01

0.01
2
DR

n/a
n/a
n/a
n/a
n/a
n/a

Department of Health and Human Services (1998), and

–

researchers have proposed that quality of life may be

-0.19*
-0.27*

improved not only by addressing illness-associated symp-

0.15*
0.02

n/a
n/a
n/a
n/a
n/a
n/a

toms by also by targeting dissatisfaction via individual

b
PQOL total score

treatment and systemic changes within the individual’s

SE B

0.08
0.10

0.08

environment or social context (Patrick et al. 2000). This

n/a
n/a
n/a
n/a
n/a
n/a
–

suggests that future research on the development and

-0.27
-0.35

impact of quality of life interventions at the individual and

0.17
n/a
n/a
n/a
n/a
n/a
n/a

systemic levels may be beneficial for adults with TS.

B

Another interesting finding is that the YGTSS interfer-

0.35
0.03
2
DR

n/a
n/a
n/a
n/a
n/a
n/a

ence score was the dimension of tic severity that best

–
–

predicted global and psychological functioning as mea-

0.46*
0.22*

sured by the SDS, PQOL, and DASS-21. Tic interference

n/a
n/a
n/a
n/a
n/a
n/a
b

–
–
SDS total score

accounted for considerable portions of the variance on

* Correlation is significant at P \ 0.05
SE B

each of these measures. When the impact of motor versus

0.23
0.22

n/a
n/a
n/a
n/a
n/a
n/a
–
–

vocal tics was examined, it was found that motor tic

interference was consistently the best predictor of scores
2.45
1.14

n/a
n/a
n/a
n/a
n/a
n/a
B

–
–

on each of these measures. This finding suggests that

functioning in adults with TS is largely impacted by the
YGTSS subscale score

entered into the model

degree to which motor tics interfere with other behaviors

Motor interference
Vocal interference
Motor complexity
Vocal complexity
Motor frequency
Vocal frequency

or impact their perception by others. Clinically, for

Motor intensity
Vocal intensity
Motor number
Vocal number

behavioral interventions that treat tics in a hierarchical

fashion (e.g., habit reversal therapy; Woods et al. 2008),
this finding suggests that it may be beneficial to first target
motor tics that most greatly disrupt intended behaviors. It

123
Community Ment Health J (2013) 49:110–120
is possible that targeting these tics first may help to
improve functioning in other areas of life more quickly and
help to ensure early treatment gains.
Approximately half of the sample reported having a co-
occurring psychiatric disorder. On one hand, this finding
introduces a limitation. The extent to which the co-occur-
ring disorder impacted global measures of psychiatric
functioning, disability, and quality of life beyond the
impact of tics themselves remains unclear. On the other
hand, it is interesting to note that about 60% of the sample
indicated that they believe that their tics preceded the
development of an emotional disorder. This finding may
simply reflect the early onset of tics relative to other psy-
chiatric disorders, but it is possible that there is a rela-
tionship between tics and later emotional difficulties.
Although future epidemiological research using more rig-
orous methodology must be conducted to clarify whether
emotional problems develop because of tics, this finding
suggests that early interventions aimed at reducing tics,
preventing adverse consequences associated with tics (e.g.,
providing psychoeducation to teachers and community
members), and teaching skills to cope with one’s emo-
tional reactions to having tics may be beneficial in terms
of preventing the development of additional psychiatric
difficulties.
Interestingly, the current sample did not reflect gender
ratios typically reported elsewhere in the TS literature (e.g.,
male to female ratio of 4.3:1; Freeman et al. 2000). This
finding may represent a response bias, given that study
volunteers are more likely to be female than male (Kazdin
2003). This ratio may also reflect the notion that the male
preponderance seen in children is reduced in adulthood.
Freeman et al. (2000) found that the male bias was sig-
nificantly more pronounced in children (5.2:1) than in
adults (1:3; P \ 0.0001). It is possible that the gender ratio
observed in the current study further supports this notion.
Future research should address the degree to which the
gender ratio changes across the lifespan and examine
whether the impact of TS differs (a) across genders and
(b) between those whose symptoms largely remit and
those who continue to experience chronic tics well into
adulthood.
Although the current study sheds light on the functional
impact of TS on adults, other limitations should be noted.
TS/CTD diagnoses and symptom severity were not con-
firmed by clinician observation. The psychometric prop-
erties of the modified YGTSS (to a self-report format) are
unclear and may differ from the clinician administered
version. Quality of life was measured globally; a tic spe-
cific quality of life measure (Cavanna et al. 2008) pub-
lished after the data collection period of the current study is
a new, beneficial tool to use in future research on the
functional impact of TS on adults. Although the
119
impairments reported here are consistent with previous
studies, it is unclear how findings generalize to clinical
populations, community populations that do not have
adequate access to the Internet, and to adults with TS who
are not connected to the TSA and thereby were not con-
tacted through the recruitment efforts in this study. The
Internet-based survey methodology may have resulted in
an under-representation of adults with TS and comorbid
ADHD, who may have been less likely to complete a
somewhat lengthy survey. It is also possible that adults
with an overall higher level of functioning were more
likely to complete the survey than adults with greater dis-
ability, suggesting that the current paper may under-esti-
mate the functional impact of TS within the larger adult TS
community.
The methodology used in the current study is not the
most rigorous means by which the impact of TS can be
studied, but the benefits of collecting a large amount of
data on such a rare disorder likely outweigh some of these
limitations. The current study demonstrates that Internet
sampling methodology can provide researchers with a
powerful and efficient, if somewhat limited, method for
identifying important information about chronic diseases
that cannot be gotten in smaller but more methodologically
rigorous studies. Although it would be ideal for future
research to replicate the current study using more rigorous
methodology, such as confirmatory face-to-face assess-
ments and cross-sectional sampling, replication in as large
of a sample may not be feasible. Therefore, it may be more
beneficial to use the current results to guide rigorous
research in the future that could address more specific
questions about TS impairment in small samples.
The present study was an initial attempt to examine and
quantify the functional impact of TS on the lives of adults.
Results suggest that the disorder impacts many in adverse
ways that may be preventable or amenable to treatment at
the individual level or to broader efforts aimed at systemic
change (e.g., public health policy, public education about
TS). These results also provide further evidence demon-
strating the importance of understanding not only tics
themselves (i.e., etiology, associated neurological dys-
function, and treatment) but also the holistic experience of
the individual with TS, including his/her perceptions of
impairment, experiences interacting with others across
social settings, and emotional reactions to living with tics.
Further research in this area may shed light on ways in
which current interventions may be bolstered to address
issues of functional impairment, such as how to improve
quality of life and how to buffer against the adverse effects
of discrimination. In addition, future research should also
include measures to better assess the public health or
financial impact of this disorder on the general population,
such as a cost-care analysis or an assessment of dollars lost
123
120
as a result of decreased work productivity due to tics. It is
our hope that the current research will compel researchers,
patient support organizations, public agencies, and health
care providers to allocate greater attention and resources to
help improve the lives of adults with TS through research
aimed at garnering a more comprehensive understanding of
TS, improved treatment, and increased efforts to accurately
educate the public about chronic tics.
Acknowledgments We would like to thank the participants for their
assistance. We would also like to thank the Tourette Syndrome
Association for their support of this project and their help with
recruitment.
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