Gilles de la Tourette syndrome is a chronic neuropsychiatric disorder that can have a detrimental impact on the health-related quality of life of children with the condition. To date no patient-reported health-related quality of life measures have been developed for children and adolescents in the English language. This study validated the first disease-specific scale for the quantitative assessment of health-related quality of life in 118 children and adolescents with Gilles de la Tourette syndrome (C&A-GTS-QOL) following language adaptation from Italian to English in the United Kingdom. Standard statistical methods were used to test the psychometric properties of the rating scale. Principal component factor analyses led to the identification of six health-related quality of life domains (cognitive, copro-phenomena, psychological, physical, obsessive-compulsive, and activities of daily living), explaining 66.7% of the overall variance. The C&A-GTS-QOL demonstrated satisfactory scaling assumptions and acceptability; validity was supported by interscale correlations (range 0.2-0.7), confirmatory factor analysis, and correlation patterns with other rating scales and clinical variables.
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Washington, DC: American Psychiatric Association; 2013.
2.
GanosCMartinoD. Tics and Tourette syndrome. Neurol Clin. 2015;33:115–136.
3.
CavannaAERickardsH. The psychopathological spectrum of Gilles de la Tourette syndrome. Neurosci Biobehav Rev. 2013;37:1008–1015.
4.
CavannaAELuoniCSelviniC. Parent and self-report health-related quality of life measures in young patients with Tourette syndrome. J Child Neurol. 2013;28:1305–1308.
5.
HirschtrittMELeePCPaulsDL. Lifetime prevalence, age of risk, and genetic relationships of co-morbid psychiatric disorders in Tourette syndrome. JAMA Psychiatry. 2015;72:325.
6.
EapenVSneddenCCrncecRPickASachdevP. Tourette syndrome, co-morbidities and quality of life. Aust N Z J Psychiatry. 2016;50:82–93.
7.
CavannaAEDavidKBanderaV. Health-related quality of life in Gilles de la Tourette syndrome: a decade of research. Behav Neurol. 2013;27:83–93.
8.
EapenVFox-HileyPBanerjeeSRobertsonM. Clinical features and associated psychopathology in a Tourette syndrome cohort. Acta Neurol Scand. 2004;109:255–260.
9.
GanosCOgrzalTSchnitzlerAMünchauA. The pathophysiology of echopraxia/echolalia: relevance to Gilles De La Tourette syndrome. Move Disord. 2012;27:1222–1229.
10.
BernardBAStebbinsGTSiegelS. Determinants of quality of life in children with Gilles de la Tourette syndrome. Move Disord. 2009;24:1070–1073.
11.
StorchEAMerloLJLackC. Quality of life in youth with Tourette’s syndrome and chronic tic disorder. J Clin Child Adolesc Psychol. 2007;36:217–227.
12.
DebesNHjalgrimHSkovL. The presence of attention-deficit hyperactivity disorder (ADHD) and obsessive-compulsive disorder worsen psychosocial and educational problems in Tourette syndrome. J Child Neurol. 2010;25:171–181.
13.
EapenVMcPhersonSSneddonC. Tic disorders and learning disability: clinical characteristics, cognitive performance and co-morbidity. Austral J Spec Educ. 2013;37:162–172.
14.
ElstnerKSelaiCETrimbleMR. Quality of Life (QOL) of patients with Gilles de la Tourette’s syndrome. Acta Psychiatr Scand. 2001;103:52–59.
15.
EddyCMRizzoRGulisanoM. Quality of life in young people with Tourette syndrome: a controlled study. J Neurol. 2011;258:291–301.
16.
RizzoRCuratoloPGulisanoMVirzìMArpinoCRobertsonMM. Disentangling the effects of Tourette syndrome and attention deficit hyperactivity disorder on cognitive and behavioural phenotypes. Brain Dev. 2007;29:413–420.
17.
RizzoRGulisanoMCaliPVCuratoloP. Long term clinical course of Tourette syndrome. Brain Dev. 2012;34:667–673.
18.
PringsheimTLangAKurlanRPearceMSandorP. Understanding disability in Tourette syndrome. Dev Med Child Neurol. 2009;51:468–72.
19.
CutlerDMurphyTGilmourJHeymanI. The quality of life of young people with Tourette syndrome. Child Care Health Dev. 2009;35:496–504.
20.
AbwenderDAComoPGKurlanR. School problems in Tourette’s syndrome. Arch Neurol. 1996;53:455–464.
21.
KanoYKonoTMatsudaN. The impact of tics, obsessive–compulsive symptoms, and impulsivity on global functioning in Tourette syndrome. Psychiatry Res. 2015;226:156–161.
22.
World Health Organization. Constitution of the World Health Organization—Basic Documents. 45th ed. Geneva: World Health Organization; 2006.
23.
Gutierrez-ColinaAMEatonCKLeeJL. Health-related quality of life and psychosocial functioning in children with Tourette syndrome: parent-child agreement and comparison to healthy norms. J Child Neurol. 2015;30:326–332.
24.
McGuireJFHanksCLewinABStorchEAMurphyTK. Social deficits in children with chronic tic disorders: phenomenology, clinical correlates and quality of life. Compr Psychiatry. 2013;54:1023–1031.
25.
LiuSZhengLZhengXZhangXYiMMaX. The subjective quality of life in young people with Tourette syndrome in China. J Atten Disord. 2014.
26.
CavannaAEMSchragAMorleyD. The Gilles de la Tourette Syndrome-Quality of Life Scale (GTS-QOL): development and validation. Neurology. 2008;71:1410–1416.
27.
CavannaAELuoniCSelviniC. The Gilles de la Tourette Syndrome-Quality of Life Scale for children and adolescents (C&A-GTS-QOL): development and validation of the Italian version. Behav Neurol. 2013;27:95–103.
28.
GaffneyGRSiegKHellingsJ. The MOVES: a self-rating scale for Tourette’s syndrome. J Child Adolesc Psychopharmacol. 1994;4:269–80.
29.
VarniJWSeidMKurtinPS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care. 2001;39:800–812.
30.
GoodmanRMeltzerHBaileyV. The Strengths and Difficulties Questionnaire: a pilot study on the validity of the self-report version. Eur Child Adolesc Psychiatry. 1998;7:125–130.
31.
KaiserHF. An index of factorial simplicity. Psychometrika. 1974;39:31–36.
32.
CattellRB. The Scree test for the numbers of factors. Multivariate Behav Res. 1966;1:245–276.
33.
De GeusFDenysD. Pitfalls in factor analytic techniques. Am J Psychiatry. 2004;161:579–580.
34.
RobertsonMMCavannaAE. The Gilles de la Tourette syndrome: a principal component factor analytic study of a large pedigree. Psychiatr Genet. 2007;17:143–152.
35.
StevensJ. Applied Multivariate Statistics for the Social Sciences. Mahwah, NJ: Lawrence Erlbaum Associates; 1996.
36.
GoodmanA1HeiervangECollishawSGoodmanR. The “DAWBA bands” as an ordered-categorical measure of child mental health: description and validation in British and Norwegian samples. Soc Psychiatry Psychiatr Epidemiol. 2011;46:521–532.
37.
RobertsonMM. Tourette syndrome, associated conditions and the complexities of treatment. Brain. 2000;123:425–462.
38.
GanosCMünchauABhatiaKP. The semiology of tics, Tourette’s, and their associations. Mov Disord Clin Pract. 2014;1:145–153.
39.
FreemanRDZinnerSHMüller-VahlKR. Coprophenomena in Tourette syndrome. Dev Med Child Neurol. 2009;51:218–227.
40.
KobierskaMSitekMGocyłaKJanikP. Coprolalia and copropraxia in patients with Gilles de la Tourette syndrome. Neurol Neurochir Pol. 2014;48:1–7.
41.
FieldA. Discovering Statistics Using SPSS. 3rd ed. London: Sage; 2009.
42.
ConeleaCAWoodsDWZinnerSH. Exploring the impact of chronic tic disorders on youth: results from the Tourette Syndrome Impact Survey. Child Psychiatry Hum Dev. 2011;42:219–242.
43.
EddyCMCavannaAEGulisanoMCaliPRobertsonMMRizzoR. The effects of co-morbid obsessive-compulsive disorder and attention-deficit hyperactivity disorder on quality of life in Tourette syndrome. J Neuropsychiatry Clin Neurosci. 2012;24:458–462.
44.
CavannaAELuoniCSelviniC. Disease-specific quality of life in young patients with Tourette syndrome. Pediatr Neurol. 2012;48:111–114.
45.
FreemanRDFastDKBurdLKerbeshianJRobertsonMMSandorP. An international perspective on Tourette syndrome: selected findings from 3500 individuals in 22 countries. Dev Med Child Neurol. 2000;42:436–447.
46.
CavannaAECritchleyHDOrthMSternJS. Dissecting the Gilles de la Tourette spectrum: a factor analytic study on 639 patients. J Neurol Neurosurg Psychiatry. 2011;82:1320–1323.
47.
KhalifaNVon KnorringA-L. Tourette syndrome and other tic disorders in a total population of children: clinical assessment and background. Acta Paediatr. 2005;94:1608–1614.
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