A phenomenological investigation of women with Tourette or other chronic tic disorders

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Comprehensive Psychiatry 53 (2012) 525–534www.elsevier.com/locate/comppsych

A phenomenological investigation of women with Tourette or otherchronic tic disorders

Adam B. Lewina,⁎, Tanya K. Murphya, Eric A. Storcha, Christine A. Coneleab,Douglas W. Woodsb, Lawrence D. Scahill c, Scott N. Comptond, Samuel H. Zinnere,

Cathy L. Budmanf, John T. WalkupgaDepartment of Pediatrics, Rothman Center for Neuropsychiatry, University of South Florida College of Medicine, Saint Petersburg, FL 33701, USA

bDepartment of Psychology, University of Wisconsin-Milwaukee, Milwaukee, WI 53201, USAcYale Child Study Center, New Haven, CT 06519, USA

dDepartment of Psychiatry and Behavioral Sciences and the Department of Psychology (Social and Health Sciences), Duke University Medical Center,Durham, NC 27710, USA

eCenter on Human Development and Disability, University of Washington and Seattle Children's Hospital, Seattle, WA 98195, USAfMovement Disorders Program in Psychiatry, North Shore-Long Island Jewish Health System, Department of Psychiatry,

New York University School of Medicine, New York, NY 11030, USAgDivision of Child and Adolescent Psychiatry, The Johns Hopkins University School of Medicine, Baltimore, MD 21205, USA

Abstract

There are little data concerning clinical characteristics of women with Tourette disorder and chronic tic disorders in the extant literatureand what is available mostly focuses on treatment-seeking individuals. The present research was conducted to provide a phenomenologicalcharacterization of tic disorders among 185 adult women with tic disorders. In addition to providing a descriptive overview of specific ticsymptoms, tic severity, self-reported history of other psychiatric conditions, and impairment/lifestyle impact due to tics, this study compares185 women and 275 men between 18 and 79 years old with tic disorders (who completed an identical battery of measures) based ondemographic, social/economic status indicators, psychiatric variables (comorbidity, family psychiatric history, symptom presentation),adaptive functioning/quality of life, and impairment variables among a nonclinical adult sample. Finally, this research examines therelationship between tic severity and impairment indicators among women with tics. Sixty-eight percent of women in our sample reportedsevere motor tics and 40% reported severe phonic tics. Our exploratory data suggest that a sizeable number of adult women with persistenttics are suffering from psychiatric comorbidity and psychosocial consequences such as underachievement and social distress. Tic severity inwomen may be associated with lifestyle interference as well as with symptoms of depression and anxiety, and such symptoms may be morecommon among women with tics than in men with tics.© 2012 Elsevier Inc. All rights reserved.

1. Introduction

Tics are rapid, nonrhythmic motor movements or vocali-zations which can be classified as simple (rapid, purposelessmovements or sounds) or complex (more purposeful, mean-ingful, elaborate, or orchestrated behavior or vocalizations).Common simple tics include eye blinking, shoulder shrugging,facial grimaces, head turning, arm jerks, sniffs, throat clearing,squeaks, and grunts. Although tics are usually brief move-

⁎ Corresponding author. Fax: +1 727 767 7786.E-mail address: [email protected] (A.B. Lewin).

0010-440X/$ – see front matter © 2012 Elsevier Inc. All rights reserved.doi:10.1016/j.comppsych.2011.07.004

ments or vocalizations, they can present as quite complex, forexample, as twisting, contorting, spinning, uncontrolledvocalizations, coprolalia (utterance of obscene words/inap-propriate remarks), and echopraxia (imitating movements ofothers). Chronic tic disorders (CTD) include Chronic Motorand Chronic Vocal Tic Disorders as well as Tourette Disorder(TD); CTD are chronic neuropsychiatric disorders withchildhood onset that are characterized by multiple motorand/or phonic tics that wax and wane in severity [1]. Chronicmotor or vocal tic disorders have tics limited to the respectivemotor/vocal domain whereas TD is characterized by thepresence of two or moremotor tics and at least one vocal tic (atsome point in the illness). Patients with CTD can volitionally

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suppress tics for varying periods of time particularly whenexternal demands (eg, social pressure) exert their influence orwhen deeply engaged in a focused task or activity.

Chronic tic disorders have an estimated prevalenceranging 0.15% to 3% [2]. Fairly consistent in patients 10years and older, a premonitory urge, that is, sensoryphenomenon that precedes and triggers the urge to tic, hasbeen described [3]. Average age of onset of CTD is 7 yearswith a peak prevalence around age 7 to 10 years [4]. In mostcases, chronic tics remit prior to adulthood [5-7] and 85% ofcases show marked attenuation in tic severity [8].

Relatively little information has been published regardingthe clinical phenomenology of TD and CTD in adult women.A possible explanation is that TD/CTD has been viewed asmore common inmen, with a male-to-female ratio of TD/CTDestimated to be approximately 2:1 to 5:1with estimates as highas 10:1 [4,9-15]. Male preponderance of tic disorders isconsistent across nationalities (with samples from Korea,Greece, China, Ecuador, Pakistan, South Africa and Swedenreporting 73%-90%males) [2]. Unfortunately, prevalence datastratified by sex for adults with TD/CTD is scant; sex isfrequently omitted from demographic characteristics [16,17].However, a large international sample of 3500 individualswith TD (69% from North American samples) found thatamong adults, the male preponderance was less pronounced(3:1 male:female ratio versus 5.2:1 in youth) [11]. Neverthe-less, men outnumbered women across sites, with womenrepresenting 20% to 35% of the samples across major sites[11]. This is consistent with findings suggesting that the malepreponderance decreases in adulthood [18]; a recent Germaninsurance database study identified a large female administra-tive prevalencewith tics in age groups older than 30 years [19].It is possible that adult women with TD/CTD may experiencea less disruptive symptom profile (compared to men withTD/CTD) and, consequently, may be less likely to present forevaluation/treatment (hence being under-represented in clin-ically ascertained studies). It is also possible that women ingeneral are less likely to seek treatment for tic symptoms ormay misattribute them to other causes.

Although many individuals in whom tic symptoms persistinto adulthood only experience mild or transient ticsymptoms [6] with minimal functional impairment, there isa sizable subset of adults with moderate to severe ticsymptoms who have either opted out of treatment or have notresponded fully to evidence-based interventions [20,21]. Inaddition, some of these adults may actually be undiagnosedentirely but are continuing to experience symptoms ofTD/CTD and associated disorders. Further, research on theimpact of TD/CTD among adults suggests functionalimpairment across several domains, such as greater unem-ployment, lower income, higher difficulties in socialrelationships, increased familial/marital stress, greater pro-pensity for mood and anxiety disturbances, and lower qualityof life (QOL) [22-27]. Notably, clinical characteristics ofadults with TD/CTD have an overrepresentation of men, forexample, 90% [28], 81% [24], and 74% [29].

To date, phenomenological studies of sex differences inTD/CTD are limited; the little existing data on sexdifferences have been derived primarily from pediatricpopulations [30]. Studies suggest that female relatives ofTD/CTD probands are more likely to exhibit obsessive-compulsive disorder (OCD) without tics, whereas malerelatives are more likely to exhibit tics [31-33]. In a study ofadults and children with TD/CTD, few differences in rates ofOCD comorbidity were found between men (74% of thesample) and women (26% of the sample) [29]. Exceptionsincluded a greater likelihood of simple tics in men and agreater likelihood of compulsive symptoms in women.However, generalization of these data are limited given thatonly 14 women older than 18 years were enrolled.

Consequently, from a public health standpoint there is agreat need to better investigate the natural history of ticsymptoms in women over the lifetime. Very little is knownabout the prevalence, phenomenology, and functional impair-ment of tics in adult women. The need for such information iscompelling because of known sex-based psychiatric comor-bidity and treatment concerns (eg,medication usage during thecourse of female reproductive cycle especially duringpregnancy, sex-related medication side effects, etc). Forexample, sex-related differences in the metabolism and side-effect profiles vary by sex [34-36], although these differenceshave not been studied in patients with TD/CTD.

Given the limitations described above, it has beendifficult to acquire data on the clinical phenomenology oftics among a large group of adult women. To address thisissue, an online survey coordinated through the University ofWisconsin–Milwaukee [37] was used to collect informationnationwide on perhaps the largest female cohort withTD/CTD to date. Internet catchment allows for samplingof a non–treatment-seeking population from a broadgeographical (and potentially financial) background. Thisresearch group has had success using internet-based surveysto examine the phenomenology and functional impact of ticdisorders in adults [38], youth [39], as well as intrichotillomania in adults [40] and youth [41,42]. Althoughinternet-based data collection is not without limitations, thisdata set provides a rare opportunity for the empiricalanalyses of an understudied population. Further, researchsuggests that data obtained from internet samples “generalizeacross presentation formats, do not appear to be tainted byfalse data or repeat responders, and are, so far, consistentwith results from traditional methods,” (p. 102) [43].

Consequently, the aims for the present exploratoryresearch were first, to provide a phenomenological charac-terization of tic disorders among a relatively large internetsample of adult women with TD/CTD. This aim includes adescriptive account of the target group's tic symptoms,symptom severity, common psychiatric comorbidities, andimpairment/lifestyle. Second, this study sought to comparewomen and men with tic disorders based on demographic,social/economic status indicators, psychiatric (comorbidity,family psychiatric history, symptom presentation), adaptive

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functioning/QOL, and impairment variables among a non-clinical adult sample. The authors hypothesized, given thathistorically women are often more highly scrutinized for anybehavior that may deviate from the social norm [44], forexample, appearance or speech, it seems logical that tics maydraw a greater social ire for women in comparison to men.Further, women may be more likely to focus on the perceptionof others and internalize negative social feedback [45] relatedto tics, which may contribute to greater illness manifestationin the form of impairment. Finally, this research aimed toexamine the relationship between tic severity and impairmentindicators among adult women with tics.

2. Method

2.1. Participants and procedures

Participants were 460 adults meeting full inclusioncriteria for the internet-based Tourette's Syndrome ImpactSurvey (TSIS; see below). To summarize, study inclusionrequired self-report of a formal diagnosis of Tourettedisorder, chronic motor tic disorder, or chronic vocal ticdisorder and self-reported onset of tics prior to age 18 years.The current research, as part of the omnibus TSIS study,received approval from the Institutional Review Board at theUniversity of Wisconsin–Milwaukee. Participants wererecruited via a Web link posted on the homepage of theTourette Syndrome Association (TSA). The TSA sentrecruitment emails to its membership list directing partici-pants to the survey, and an announcement about the studywas placed in a TSA newsletter. The survey was postedonline for 8 consecutive months (March 2008 untilNovember 2008). The entire TSIS survey took approximately60 minutes to complete. As reported by Ref. [37], nosuspected repeat responders were identified [37].

2.2. Measures1

2.2.1. Tourette Syndrome Impact SurveyThe TSIS [37] assessed basic demographics (including

age, ethnicity, income, marital status, and education); self-reported diagnoses of psychiatric disorders; the age at ticonset; and associated clinical impact. Marital status wasobtained using a forced-choice nominal scale (single, nevermarried, married, separated, divorced, widowed), and ordinalscales were used to assess employment, education (did notgraduate high school to doctoral degree) and income (b$10000 to $75 000+). Diagnosis was assessed by asking whetherthe participant has ever been formally diagnosed (by aphysician or psychologist) with a particular syndrome (eg,Tourette disorder, chronic motor tic disorder, OCD, depres-sion). Family history of psychiatric conditions was assessed

1 Please note, psychometric properties for measures reported in thisstudy may overlap subsets of the sample reported in Conelea et al. and otherTSIS research that is currently in preparation.

similarly for each family member (rated as yes/no).Treatment history was obtained by asking the participant(yes/no) if he/she had obtained/pursued several differenttreatment options (including a list of medications). Clinicalimpact was ascertained via a series of questions developed forthe TSIS [37] asking questions about the impact of tics onvarious domains of functioning. Specifically, avoidance (eg,of public places or social events) and tic-related pain wereassessed via a binary query (yes/no); degree of interference(eg, with leisure, relational, and domestic activities) wasassessed using a 9-point Likert scale (anchored by 1-mildand 9-severe). The survey included questions asking aboutthe impact of tics on various domains of functioning,including physical (eg, “Have you ever had tics thatcaused pain or physical damage to you?”), social (eg, “Inthe last 12 months, how much did your tics interfere withyour social life?”), occupational (eg, “In the last 12months, how much do you think tics interfered with yourability to work?”), academic (eg, “In the last 12 months,how much do you think tics interfered with your academiclife?”), and emotional (eg, “Do you feel different orabnormal because of your tics?”). Participants were alsoasked whether they had encountered discrimination as aresult of their tics (eg, “Have you ever been treateddifferently because of your tics?”, “Have you ever beenfired from a job because of your tics?”).

2.2.2. Yale Global Tic Severity ScaleFor the purposes of the current internet-based study, the

Yale Global Tic Severity Scale (YGTSS) [46] (usuallyadministered as a semi-structured interview) was deliveredas a self-report format. Participants are first asked to identifythe presence of specific motor and phonic tics (simple andcomplex) occurring over the past 7 days. Subsequently, theYGTSS asks the participant to rate the number, frequency,intensity, complexity, and interference of motor and vocaltics separately. Each of these domains was rated on a 0- to 5-point scale, with higher scores indicating greater severitywithin each of the noted domains. Item scores weresummed, yielding a total severity score ranging from 0-50for which motor and vocal subscale scores each ranged from0-25. The YGTSS has well supported psychometricproperties including good convergent and discriminantvalidity and interrater reliability [46,47], and strongpsychometrics were reported for this sample [37]. In thisstudy, consistent with the extant literature, the YGTSS totalseverity score was used as a proxy for tic severity.Consistent with standard practice, YGTSS severity total≥20 was considered clinically significant (or YGTSS motortotal [or phonic total] ≥12) [6,8,48].

2.2.3. Depression Anxiety and Stress Scale, 21-Item VersionThe online survey also administered the Depression

Anxiety and Stress Scale (DASS) [49], a 21-item self-reportdepression, anxiety, and stress scale. Items are rated on a 4-point scale (ranging from 0 “Did not apply to me at all,” to 3

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“Applied to me very much or most of the time”) according tothe extent to which the symptoms were experienced duringthe past week. There are 3 subscales (depression, anxiety,and stress), each with seven items. Items from each scale aresummed and multiplied by 2, yielding a range of possiblescores from 0 to 42, with higher scores indicating greaterfrequency of symptoms. Good internal consistency (α =.92-.97) [50] and construct validity has been previouslydocumented [51].

2.2.4. Perceived Quality of Life ScaleThe Perceived Quality of Life Scale (PQOL) [52] is a 19-

item self-report scale whichmeasures the perceived quality ofone's life. Empirically-derived subscores measuring satis-faction with physical, social, and cognitive health/well-beingare available. Items are rated on an 11-point Likert scaleranging from 0 (“extremely dissatisfied”) to 10 (“extremelysatisfied”). The PQOL has demonstrated good internalconsistency (α = .88-.91; [50]) and convergent validity[53]. A population mean/median of 7.5 has been established,with lower scores indicating greater dissatisfaction withquality of life [52].

2.2.5. Premonitory Urge for Tics Scale [54]The Premonitory Urge for Tics Scale [54] is a 9-item, 4-

point Likert scale assessing tic-related premonitory urges.Scores range from 9 to 36, with higher scores suggesting agreater likelihood that an individual has experiencedpremonitory urges. Good internal consistency (α = .81)[50] and temporal stability at 1 and 2 weeks has beenreported [54].

2.2.6. Sheehan Disability Scale (SDS) [55]The SDS is a 3-item scale that assesses functional disability

in three domains: employment (or school), social/friendships,and family/relationship life. Items are rated based on the extenttowhich a symptom disrupts functioning in each domain and isan index of functional impairment. The scale has demonstratedgood internal consistency (α = .89).

2.3. Analytic plan

χ2 and odds ratios as well as t tests were used to comparewomen and men across nominal/ordinal and interval/ratiodata, respectively. Pearson correlations were used tocompare tic severity with impairment and self-reportedsymptoms of depression/anxiety.

3. Results

3.1. Sample demographics2

There were no significant differences in age betweenfemale (n = 185; M = 34; SD = 11.8) and male (n = 275;

2 Demographic data from this study may overlap with subsets of thesample reported in [12] and other TSIS study research currently inpreparation. Please note that any duplicated analyses across TSISpublications should not be considered independent findings.

M = 37.3; SD = 13.4) participants, t(458) = 2.7, P = .007.Similarly, ethnicity was also similar across both sexes inthis sample, χ2(7) = 4.0, P = .79. After controlling for age,female and male respondents did not differ with regard tomarital status χ2(4) = 4.8, P = .31 or number of childrenχ2(5) = 5.5, P = .36.

3.2. Phenomenological data for women in our sample

Our data suggest that almost all women with ticsexperience simple motor tics and three-quarters experiencesimple phonic tics at some point during their lifetimes.Further, approximately 79% reported a lifetime prevalenceof complex motor tics and over one-third of women reporteda lifetime prevalence of complex phonic tics. Of ticsoccurring within the seven days prior to the survey, eyeblinking and head jerking were among the most commonmotor tics and throat clearing and sniffing were the mostcommon phonic tics. The rates of coprolalia (10.6%) andcopropraxia (6.4%) among women in our sample werecomparable to previously reported data (14.6% and 4.9%,respectively [56]).

Income breakdown for women in our sample was asfollows: 12% reported earning greater than $75 000, 13%reported earning $50 000-75 000, 18% reported earning$30 000-49 000, 14% reported earning $20 000-29 000, 15%reported earning 10 000-19 000 and 28% reported earningless than $10 000. All but 1.1% of women completed highschool. Sixty-nine percent of women in our sample earned a2-year college degree or higher, 56% earned a 4-year degreeor higher, and 22% earned a graduate degree. The modalnumber of offspring was 0 (n = 105) followed by 2 (n = 33)and 1 (n = 25). Modal age of tic onset was age 5 years (16%of women in our sample) followed by age 7 years (15%) andage 8 years (14%).

Eighty percent of women reported receiving treatmentfor tics at least once during their course of illness. Themodal age of first treatment was the category described as“≥18-years” (38%); between 4.3% and 7.1% of womenreported first receiving treatment between the ages of 7 and12 years. Of those receiving treatment, 64% of womenreported receiving pharmacotherapy for tics, and 12.1%reported receiving some form of behavioral or cognitive-behavioral therapy. Forty-seven percent reported perceivedbenefit from medication and 24.3% perceived the benefitfrom medication to exceed 1 year. Only 4.4% of those whoreceived psychotherapy3 reported a perceived benefit, and1.8% reported that this benefit exceeded 1 year. Rates ofcomorbidity, tic symptomology, current presentation, andfunctional interference for women in our sample areprovided in Tables 1-4 and are discussed in the textbelow (in the context of sex comparisons).

3 Psychotherapy does not imply Habit Reversal Therapy (HRT) orother treatments empirically evaluated for patients with tic disorders.

Table 1Self-reported lifetime history of receiving a diagnosis of co-occurringpsychiatric syndromes

History or current self-reported comorbidity Women (%) Men (%)

Any other disorder⁎ 59.8 42.4OCD⁎ 41.5 30.5ADHD 26.3 20.9Skin picking 5.6 3.8Non-OCD anxiety⁎ 33.7 15.5Disruptive behavior disorder 1.9 3.3Mood disorder⁎ 35.6 23.2Eating disorder⁎ 4.8 1Trichotillomania 4.8 2.3

⁎ Significant group difference at the P b .01 (minimal) level.

able 3ercentage of women reporting the presence of specific tic symptoms in theast week (as listed on the YGTSS)

ic Symptom Women experiencing ticswithin past week (n = 185)

% Simple tics % Complex tics

ye blinking 47.9 –ye movements 35.5 41.9ose movements 30.2 –outh movements 35.5 32.1acial grimace 36.6 44.2ead jerks 41.5 46.0houlder shrugs 34.3 42.6rm movements 28.7 33.2and movements 34.0 35.1bdominal tensing 29.4 –eg, foot, toe movements 36.6 29.1riting tics – 14.3ending, spinning or gyrating – 13.2otating/Twirling – 4.2locking – 13.2ic related compulsions – 52.1opropraxia – 6.4elf abuse – 12.8aroxysms of tics – 24.2isinhibited behavior – 16.6oughing 27.5 –hroat clearing 44.5 –niffing 32.8 –nimal/bird noises 12.8 –yllables – 17.4ords – 10.6oprolalia – 10.6cholalia – 12.5alilalia – 7.2locking – 12.8isinhibited speech – 7.5

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3.3. Gender differences

3.3.1. ComorbidityThe authors examined whether women with tics were

more likely to report being diagnosed with a comorbidpsychiatric syndrome. A significant association was foundbetween sex and the presence of a comorbid psychiatriccondition χ2(1) = 19.35, P b .001. Specifically, odds ratiosindicate that women in our sample were 2.01 times morelikely to report a comorbid condition than men; adult womenwith TS reported a significantly greater likelihood than theiradult male TS counterparts to have been diagnosed with thefollowing syndromes: 1.61 times more likely to reporthaving OCD, χ2(1)= 8.43, P = .004; 2.75 times more likelyto report having non-OCD anxiety disorders χ2(1) = 29.94,P b .001; 1.83 times more likely to report mood disordersχ2(1)= 12.15, P b .001; and 11.25 times for likely to havereported a history of an eating disorder χ2(1) = 30.47, P b.001. Our data suggested no sex differences in the presenceof trichotillomania, Attention Deficit Hyperactivity Disorder(ADHD), disruptive behavior disorders, and skin picking.Please see Table 1 for a presentation of self-reportedcomorbidity rates for women and men.

3.3.2. Dimensional comparisonsThe authors also examined anxiety and depression

symptoms dimensionally. Women were more likely toreport elevations in anxiety and depressive symptoms. Forexample, women were 1.8 times more likely to report feelingdifferent or abnormal secondary to tics (χ2(1) = 6.4, P =.012) and were 1.55 times more likely to report that ticsmay have led to the development of depression or anxiety(χ2(1) = 5.2, P = .023). Self-reported anxiety and stresssymptoms were also higher for women than for men. Female

Table 2Self-reported lifetime prevalence of tic symptoms by sex

Self-reported lifetime prevalence of tic symptoms Women (%) Men (%)

Simple motor tics 96.7 95.7Simple phonic tics 76.8 77.9Complex motor tics 78.7 72.2Complex phonic tics 35.0 36.6

Note: no differences are statistically significant.

TPp

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participants had a higher mean DASS Stress total (M = 9.5,SD = 5.1) than men (M = 8.1, SD = 5.2); t (523) = -3.05, P =.002. Similarly, women had a higher mean DASS Anxietytotal (M = 4.9, SD = 4.5) than men (M = 3.7, SD = 4.0);t (529) = −3.2, P = .002. Self-reported depressivesymptoms on the DASS did not differ between sexes.

3.3.3. Family historyData were also analyzed for sex differences in reported

comorbidity among first-degree relatives (parents andsiblings). Women were significantly more likely than mento report the presence of the following psychiatric syndromesamong relatives: tic disorders (2.24 times more likely), OCD(2.18), non-OCD anxiety (2.47), ADHD (2.01), and mooddisorders (2.54).

3.3.4. Tic Symptom presentationIn the present sample, we identified no sex differences in

multiple characteristics of tic presentation as assessed via theYGTSS including: the presence of motor tics, the presence ofphonic tics, presence of complex tics, the total number of ticsexperienced, tic frequency, tic intensity, tic complexity,

Table 4Tic impact on women in this study

Behavior or activity change secondary to tics

Women Men Significantdifference

Quit a job due to tics 11.4% 9.5% NSFailed to pursue advancement

due to tics17.8% 19.0% NS

Avoided a job interviewsecondary to tics

17.7% 17.7% NS

Terminated employmentdue to tics

11.7% 10.2% NS

Avoiding social eventsdue to tics

49.2% 34.6% P = .001

Avoiding going out inpublic places due to tics

45.8% 33.0% P = .001

Avoiding group activitiessecondary to tics

50.6% 37.1% P = .001

Been treated differentlybecause of tics

82.5% 82.5% NS

Asked to leave a publicplace due to tics

18.5% 22.6% NS

Treated rudely because of tics 40% 35.4% NSFeel abnormal due to one's tics 87% 78.7% P = .01Work missed secondary to tics

(mean in days, past year)0.75 0.62 NS

Tic-related diminished workproductivity (mean in days, past year)

12.75 17.35 NS

NS = not significant.

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interference, or tic-related impairment. In addition, there wereno differences in self-reported lifetime prevalence of thesesymptoms (see Table 2). The mean YGTSS total for womenwas 23.0 (SD = 10.5), and the mean YGTSS total for men was21.6 (SD = 10.3), t(571) = 1.6, P = .10. Approximately 61%of women reported clinically significant symptoms on theYGTSS (YGTSS total≥20; separating motor and phonic tics,68% of women reported a motor tic total ≥12 and 40%reported a phonic tic total ≥12). Twenty-eight percent ofwomen reported severe tic symptoms (YGTSS total ≥30).(No sex differences were found based on the participant'sreported age of tic first onset, χ2(15) = 23, P = .08, or the self-reported experience of a premonitory urge, t (543) = 1.6, P =.12. A breakdown of currently reported tic symptoms bywomen in this study is presented in Table 3.

3.3.5. Tic impact and impairmentDescriptive data on tic impact among women are

presented in Table 4. Women reported greater tic-relatedinterference with their social lives (M = 3.9, SD = 2.7) thanmen (M = 3.1, SD = 2.6); t(567) = −2.01, P = .045. Further,women were 1.8 times more likely to report avoiding socialevents due to tics (eg, parties, concerts, reunions, movies) incomparison to men, χ2(1) = 12.1, P = .001. Similarly,women were significantly (1.7 times) more likely to avoidgroup activities due to tic presence, χ2(1) = 10.2, P = .001.Female participants also reported greater interference withtheir private leisure activities (M = 3.8, SD = 2.8) thantheir male counterparts (M = 3.3, SD = 2.5); t(484) = −2.3,

P = .021. Women also reported greater tic-relatedinterference with home management activities (M = 3.3,SD = 2.6) than men (M = 2.6, SD = 2.3); t (477) = −3.1,P = .002. Finally, female participants reported morediminished physical well-being (M = 6.3, SD = 1.8) thanmale respondents (M = 6.6, SD = 1.8); t(522) = 2.08, P =.038 (assessed via the Perceived QOL scale). However,men were 1.78 times more likely to report that tics haveresulted in pain [χ2(1) = 9.16, P b .002] in comparisonwith women in this sample. No differences in tic-specificoccupational or educational functioning were reported.

3.3.6. Social/economic status differencesAmong employed individuals (n = 440), individual

income was lower for female (n = 174) participants ascompared to male counterparts (n = 266) χ2(5) = 29.45,P b .001. Seventy-eight percent of men reported earning$75 000 a year or greater (the highest income categorylisted as a response choice) whereas only 12% of womenreported equivalent earnings. Similarly, 17% of men and13% of women reported earning $50 000 to 75 000 ayear. Forty-three percent of women reported earningsunder $25 000 a year whereas only 22% of men reportedsimilar earnings. This is also true in the general population;women earn less than men. In the general United Statespopulation, 23.2% of men earn $75 000 a year or more,whereas 11.4% of women report the same. Eighteen percentof men in the general US population earn less than $25 000 ayear, whereas 28% of women report the same (US CensusBureau, 2006-2008 Community Survey) ([56]. Highlights ofWomen's Earnings in 2008).

Of the 459 individuals reporting on educationalaccomplishments (275 men and 184 women), sexdifferences were also identified based on educationalachievements χ2(5) = 11.8, P = .04. Eleven percent ofmen earned doctoral level degrees whereas 3.8% ofwomen reported receiving equivalent education. However,percentages for master's and bachelor's degrees wereroughly equivalent between sexes. These findings can becontrasted with a report from the United States Departmentof Education 2005-2006 that indicated women earned57.5%, 49.8%, and 48.9% of bachelor's, professional, anddoctoral level degrees (US Department of Health andHuman Services, 2009 [57], Highlights of Women'sEarnings in 2008).

3.3.7. TreatmentNo sex differences were reported in treatment-seeking

behavior, ever having received treatment, or attitudestowards treatment. Further, among those who soughttreatment, the sexes did not differ in the modality ofintervention, perceived benefit of the treatment, or perceivedduration of benefit. Among individuals receiving pharma-cotherapy for tics, medication classes did not differ, nor didattitudes towards medication.

Table 5Associations between tic severity and clinical features among women withchronic tics

Depressive Symptoms .28⁎⁎

Anxious Symptoms .22⁎

Overall Impairment .47⁎⁎

Social Interference .51⁎⁎

Relational Interference .44⁎⁎

Familial Interference .36⁎⁎

Romantic Interference .26⁎⁎

Leisure Interference .45⁎⁎

Domestic Interference .42⁎⁎

Occupational Interference (n = 174) .47⁎⁎

Academic Interference (n = 82) .36⁎⁎

⁎ P b .01.⁎⁎ P b .001. Based on data from the TSIS (Tourette Syndrome Impact

Survey) and SDS (Sheehan Disability Scale).

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3.4. Associations between tic severity and clinical markersamong women with chronic tic disorders

Tic severity (assessed via the YGTSS) was found to beassociated with depressive/anxious symptoms (assessed viathe DASS) and all indicators of functional impairmentamong women with chronic tic disorders (assessed via theSDS and TSIS impairment items). Data are presented inTable 5. In addition, results showed significant, positivecorrelations between tic severity and likelihood of ticsinterfering with the following life events among women:relations with coworkers; greater likelihood of dropping outof school, quitting a job, and being made redundant from ajob; being asked to leave public places; being asked to leavea classroom; and being treated rudely by a business.

Women endorsing complex tics at the time of the survey(n = 39) reported significantly greater impairment on theSDS (M = 9.6, SD = 7.0) than women without complex tics(n = 181), M = 5.6, SD = 3.7; t (107) = -5.1, P b .000.Furthermore, women with complex tics (n = 160) reportedsignificantly lower QOL (mean = 6.4, SD = 1.7) thanwomen without complex tics (n = 38), mean = 6.4, SD =1.6; t(196) = 2.7, P = .008.

Finally, women reporting coprophenomena at the time ofthe study (n = 25) reported significantly greater impairmenton the SDS (M = 11.5, SD = 6.6) than women withoutcoprophenomena (n = 195, M = 8.5, SD = 6.7, t (218) =−2.0, P = .04. No significant difference between groups wasfound for QOL, t (196) = -.82, P = .42.

4 Co-occurring psychopathology refers to patient report of a profes-onally diagnosed psychiatric disorder.

4. Discussion

The first aim of this research was to provide the first large-scale phenomenological investigation of adult women withtics from a non clinic-based sample. A sizable proportion ofwomen (61%) reported a level of tics considered to beclinically significant (YGTSS total severity ≥20) [6,8].Moreover, almost a third of women endorsed markedly high

tic severity (YGTSS total severity of greater or equal to 30;[6]). The impact of tics on activities of daily living was alsosignificant as reported by the adult women who participatedin this online survey. Nearly 90% percent of women reportedfeeling “abnormal” due to the presence of their tics and over80% of women reported being treated differently due to tics.Moreover, half of the women in our sample reported socialavoidance and disruption of relationships (familial, romantic,and non-romantic) secondary to tics, findings that arecomparable to men [24].

Tic severity in adult women was strongly associated withimpairment across a number of domains (eg, social,occupational, academic, relational, domestic, and familial).In addition, the presence of coprophenomena and complextics was associated with increased functional impairment.Although relatively uncommon and not necessary for aclinical diagnosis of TD/CTD, coprolalia (and copropraxia)are often the most distressing symptoms among patients withtics [56,58,59]. Potentially, complex tics and paroxysms oftics are also more noticeable and have an increasedlikelihood of disrupting activities, speech, and other aspectsof daily functioning.

While most women in the sample reported receiving someform of treatment, very few reported receiving anybehavioral therapy, despite considerable psychiatric comor-bidity and tic severity. This suggests that mental healthpractitioners need to improve awareness, education, out-reach, and dissemination of potentially valuable non-pharmacological treatments such as cognitive behavioraltherapy and Habit Reversal Therapy [60,61].

It is also notable that while most women described anearly age of tic onset, almost a third of the adult women withTS in this sample first received treatment after age 18 years.This latency between symptom onset and receipt oftreatment has also been reported in adults with OCD [62]and may be due to a variety of factors. First, women mayexperience increased adverse impact of tics with age (eg,when entering adulthood; [22], or longer lifetime burden ofhaving a neurological disorder). Since tics are often mistakenfor symptoms of other afflictions such as allergies, attention-seeking behaviors, problems with vision, etc, this too maycontribute to the delay between onset of symptoms andtreatment. Milder tic symptoms may have gone largelyunrecognized or were viewed as not requiring treatment. Inaddition, there may be a sex bias in terms of medicaldiagnosis, with women being more likely to receivepsychological diagnoses when presenting for medicalevaluation than their male counterparts [63,64].

Our second objective was to contrast adult women andmen with TD/CTD on the basis of several dimensionsincluding symptom severity, self-reported diagnosis of co-occurring psychopathology4, income/educational differ-ences, treatment history, psychosocial impact of tics, and

si

532 A.B. Lewin et al. / Comprehensive Psychiatry 53 (2012) 525–534

functional impairment. Among participants in this onlinesurvey, tic symptom severity did not significantly differ bysex. However, women are significantly more likely to reportsymptoms of psychiatric comorbidity such as a history ofdepression, OCD, and non-OCD anxiety. The 1.8 timeshigher rate of depression in women (compared to men) isroughly consistent with general large-scale populationstudies (1.6×) [65,66]. However, the female preponderanceof non-OCD anxiety was somewhat higher than generalpopulation differences (2.8× vs 1.6×) [66,67] but was higherthan expected among women in the general population, sincewomen tend to have higher rates of non-OCD anxiety thanmen. Similarly, rates of OCD are generally equivalent acrosssexes in adults in the general population [68], but womenwith TD/CTD were 1.6 times more likely to have OCDcompared to men with TD/CTD in this sample. This is aninteresting finding because the rates of OCD symptoms inchildren with TS reflect the reverse (ie, OCD symptoms aremore common in men with tics). Finally, although womenreported a similar prevalence of ADHD as men with TS inour sample, the lifetime prevalence of ADHD in men in thecommunity is more than double the rate for women [69].This suggests that adult women with TD/CTD are at evenhigher risk for suffering from comorbid ADHD than womenin the general population. Because adult ADHD is such adisabling condition [70], this finding has potentiallyimportant consequences for the evaluation and managementof adult women with TD/CTD.

Nationally, women, on average, earn 80% of what menearn [57] (United States Census, 2005; Highlights ofWomen's Earnings in 2008). Similarly, the adult womenwith TD/CTD in our sample reported lower personal incomethan their male TD/CTD counterparts. Although this cannotbe proven from the data generated by this exploratory studyalone, it is possible that the socioeconomic and educationalconsequences for women with TD/CTD are even moresevere than those for adult men with TD/CTD and this meritsfurther study. It is certainly noteworthy that we were unableto control for part-time/full-time status, parenting obligationsand a number of other factors that influence employment andeducational status in women.

Evidence supporting the possibility that adult womenwith TD/CTD may experience more significant psychoso-cial impact than their adult male counterparts is supportedby this survey's data that shows women reported increasedrates of tic-related interference with their social, leisure, anddomestic activities in comparison to men. Further, womenreported greater public avoidance due to tics, lower QOL,and diminished physical well-being. These findings havesignificant implications for improving treatment, recogni-tion, and advocacy for adult women with TD/CTD.Interventions for women with TD/CTD should addressfunctional interference via active targeting of contributingsymptoms, whether tic-specific or otherwise (eg, socialanxiety related to tics, skills deficits). Outreach and supportgroups may also be indicated due to the impact of

stigma/social avoidance. Given the impact of co-occurringpsychiatric problems on functioning [71], the reduction ofsuch co-occurring symptoms in the course of treatmentmay be essential for reducing disability. It may be thatsimply addressing tic symptoms is not enough to returnpatients to premorbid levels of functioning, suggesting theneed to explore interventions that target these problems(eg, cognitive-behavioral therapy and/or medication forOCD or depression; behavioral strategies in the presenceof skill deficits such as occupational dysfunction). Inaddition, given the relations between severity andimpairment, evaluation of mediators/moderators of thisrelationship should be considered to enhance our under-standing of their interactions.

There are a number of limitations inherent in the presentstudy. First, economic and educational comparisons do notinclude a control group without TD/CTD. Consequently, weare unable to compare women with TD/CTD with womenwithout TD/CTD. Second, as discussed above, we wereunable to control for factors such as part-time employment,part-year employment, and job type. Consequently, there area number of sources of error that may explain economicdifferences between men and women in our sample. Third,despite providing one of the largest sample on non-treatmentseeking women with TD/CTD to date, the internet-basednature of sampling can be considered a limitation, such as theinability to confirm symptom severity using face-to-faceassessment. However, previous research using similarmethodologies have demonstrated data consistent in reli-ability and content validity compared to clinic andcommunity samples [38-43,72]. Given the relative dearthof information on adult women with tics, this relatively largesample provides a platform for hypothesis generation andresearch development aimed at factors identified in thisexploratory research, such as impairment and functionallimitations. Although the representative nature of this samplecan be questioned, the internet sampling method offersadvantages as it transcends geographical limitations, is notlimited to a treatment-seeking population, and does notrequire presentation to a research program/in-person contact(which may consequently facilitate participation by highlyanxious or highly impaired individuals who would notpresent to an office-based setting). Fourth, use of the self-report YGTSS can be considered a limitation given that thismeasure is typically administered by a clinician. However,strong relationships between the YGTSS and tic self andparent-report measures have been documented [73,74]. Fifth,rates of diagnostic comorbidity may be biased due totreatment-seeking behavior (given that comorbidity statuswas based on reports of formal diagnostic history). Futurestudies could employ online diagnostic interviews [72].Sixth, women who responded to this survey may be moredistressed and impaired than women with TD/CTD;nevertheless, the present study was not a treatment-seekingsample, possibly mitigating this potential limitation. Finally,diagnostic criteria for TD/CTD and other syndromes were

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obtained based on patient report rather than a clinical orstructured interview.

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