Health-related quality of life in Gilles de la Tourette syndrome: A decade of research

Behavioural Neurology

Volumn 27, Issue 1, 2013, Pages 83-93

  Cavanna, Andrea Eugenio ^a,b   David, Kate ^b   Bandera, Valentina ^c   Termine, Cristiano ^c   Balottin, Umberto ^d   Schrag, Anette ^a,e   Selai, Caroline ^a  

^a UNIVERSITY COLLEGE LONDON   (United Kingdom)

^b UNIVERSITY OF BIRMINGHAM   (United Kingdom)

^c UNIVERSITY OF INSUBRIA   (Italy)

^d UNIVERSITY OF PAVIA   (Italy)

^e ROYAL FREE AND UNIVERSITY COLLEGE MEDICAL SCHOOL   (United Kingdom)

Author keywords

behavioural problems; functional impairment; Gilles de la Tourette syndrome; health related quality of life; tics

Indexed keywords

ASPERGER SYNDROME; ATTENTION DEFICIT DISORDER; BRAIN DEPTH STIMULATION; COMORBIDITY; COPING BEHAVIOR; FUNCTIONAL DISEASE; GENERALIZED ANXIETY DISORDER; GILLES DE LA TOURETTE SYNDROME; GLOBUS PALLIDUS; HUMAN; MAJOR DEPRESSION; NEUROSURGERY; OBSESSIVE COMPULSIVE DISORDER; OPPOSITIONAL DEFIANT DISORDER; PANIC; PATIENT SATISFACTION; PRIORITY JOURNAL; QUALITY OF LIFE; REVIEW; SOCIAL PHOBIA; STIGMA; TREATMENT OUTCOME; WELLBEING;

COMORBIDITY; HUMANS; MENTAL DISORDERS; QUALITY OF LIFE; TOURETTE SYNDROME;

EID: 84876902603     PISSN: 09534180     EISSN: 18758584     Source Type: Journal    
DOI: 10.1155/2013/732038     Document Type: Review

References (54)

1. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition, Text Revision (DSM-IV-TR). Washington DC: APA, 2000.
2. Freeman RD, Fast DK, Burd L, Kerbeshian J, Robertson MM, Sandor P. An international perspective on Tourette syndrome: Selected findings from 3, 500 individuals in 22 countries. Dev Med Child Neurol. 2000; 42: 436-447.
3. Robertson MM, Eapen V, Cavanna AE. The international prevalence, epidemiology, and clinical phenomenology of Tourette syndrome: A cross-cultural perspective. J Psychosom Res. 2009; 67: 475-483.
4. Cavanna AE, Servo S., Monaco F, Robertson MM. More than tics: The behavioral spectrum of Gilles de la Tourette syndrome. J Neuropsychiatry Clin Neurosci. 2009; 21: 13-23.
5. Robertson MM. Tourette syndrome, associated conditions and the complexities of treatment. Brain. 2000; 123: 425-462.
6. Mol Debes NM, Hjalgrim H, Skov L. Validation of the presence of comorbidities in a Danish clinical cohort of children with Tourette syndrome. J Child Neurol. 2008; 23: 1017-1027.
7. Khalifa N, Von Knorring AL. Tourette syndrome and other tic disorders in a total population of children: Clinical assessment and background. Acta Paediatrica. 2005; 94: 1608-1614.
8. Stefl ME. Mental health needs associated with Gilles de la Tourette's Syndrome. Am J Pub Health, 1984; 74: 1310-1313.
9. Erenberg G, Cruse RP, Rothner DA. The natural history of Tourette's syndrome: a follow-up study. Ann Neurol. 1987; 22: 383-385.
10. Champion LM, Fulton WA, Shady GA. Tourette syndrome and social functioning in a Canadian population. Neurosci BiobehavRev. 1988; 12: 255-257.
11. Hubka GB, Fulton WA, Shady GA, Champion LM, Wand R. Tourette syndrome: impact on Canadian family functioning. Neurosci Biobehav Rev. 1988; 12: 259-261.
12. Grossman HY, Mostofsky DI, Harrison RH. Psychological aspects of Gilles de la Tourette syndrome. J Clin Psychol. 1986; 42: 228-235.
13. Marcks BA, Berlin KS, Woods DW, Davies WH. Impact of Tourette syndrome: A preliminary investigation of the effects of disclosure on peer perceptions and social functioning. Psychiatry. 2007; 70: 59-67.
14. Packer LE. Tic-related school problems: Impact on functioning, accommodations, and interventions. Behav Modif. 2005; 29: 876-899.
15. Termine C, Selvini C, Balottin U, Luoni C, Eddy CM, Cavanna AE. Self-, parent-, and teacher-reported behavioural symptoms in young people with Tourette syndrome: A case-control study. Eur J Paediatr Neurol. 2011; 15: 95-100.
16. Abwender DA, Como PG, Kurlan R, Parry K, Fett KA, Cui L, et al. School problems in Tourette's syndrome. Arch Neurol. 1996; 53: 455-464.
17. Carter AS, O'Donnell DA, Schultz RT, Scahill L, Leckman JF, Pauls DL. Social and emotional adjustment in children affected with Gilles de la Tourette's syndrome: associations with ADHD and family functioning. J Child Psychol Psychiatry. 2000; 41: 215-223.
18. Rizzo R, Curatolo P, Gulisano M, Virzì M, Arpino C, Robertson MM. Disentangling the effects of Tourette syndrome and attention deficit hyperactivity disorder on cognitive and behavioral phenotypes. Brain Dev. 2007; 29: 413-420.
19. Spencer TJ, Biederman J, Faraone S, Mick E, Coffey B, Geller D, et al. Impact of tic disorders on ADHD outcome across the life cycle: Findings from a large group of adults with and without ADHD. Am J Psychiatry. 2001; 158: 611-617.
20. Stephens RJ, Sandor P. Aggressive behaviour in children with Tourette syndrome and comorbid attention-deficit hyperactivity disorder and obsessive-compulsive disorder. Can J Psychiatry. 1999; 44: 1036-1042.
21. Hoekstra PJ, Steenhuis MP, Troost PW, Korf J, Kallenberg CGM, Minderaa RB. Relative contribution of attention-deficit hyperactivity disorder, obsessive-compulsive disorder, and tic severity to social and behavioral problems in tic disorders. J Dev Behav Pediatrics. 2004; 25: 272-279.
22. Zinner SH, Conelea CA, Glew GM, Woods DW, Budman CL. Peer Victimization in Youth with Tourette Syndrome and Other Chronic Tic Disorders. Child Psychiatry Hum Dev. 2012; 43:124-136.
23. Thibert AL, Day HI, Sandor P. Self-concepts and self-consciousness in adults with Tourette's Syndrome. Can J Psychiatry. 1995; 40: 35-39.
24. Bruun RD. The natural history of Gilles de la Tourette's Syndrome. In: DJ Cohen, RD Bruun, JF Leckman, editors. Gilles de la Tourette's Syndrome and related tic disorders. Yale: Wiley Interscience Publications, 1988, pp. 22-38.
25. Eddy CM, Rizzo R, Cavanna AE. Neuropsychological aspects of Tourette syndrome: A review. J of Psychosom Res. 2009; 67: 503-513.
26. Asam U. A follow-up study of Tourette's syndrome. In: Friedhoff AJ, Chase TN, editors. Gilles de la Tourette's Syndrome. Advances in Neurology New York: Raven Press, 1982, pp. 285-286.
27. World Health Organization. Constitution of the World Health Organization-Basic documents. 45th ed., 2006.
28. Storch EA, Merlo LJ, Lack C, Milsom VA, Geffken GR, Goodman WK, Murphy TK. Quality of life in youth with Tourette's syndrome and chronic tic disorder. J Clin Child Adolesc Psy-chol. 2007; 36: 217-227.
29. Babel TB, Warnke PC, Ostertag CB. Immediate and long term outcome after infrathalamic and thalamic lesioning for intractable Tourette's syndrome. J Neurol Neurosurg Psychiatry. 2001; 70: 666-671.
30. Foltynie T, Martinez-Torres I, Zrinzo L, Joyce E, Cavanna AE, Jahanshahi M, et al. Improvement in vocal and motor tics following DBS of motor GPi for Tourette syndrome, not accompanied by subjective improvement in quality of life: A case report. Mov Disord. 2009; 24(Suppl.1): 497-498.
31. Elstner K, Selai CE, Trimble MR, Robertson MM. Quality of Life (QOL) of patients with Gilles de la Tourette's syndrome. Acta Psychiatrica Scand. 2001; 103: 52-59.
32. Ware JE, Snow, KK, Kosinski M, Gandek B. SF-36 Health survey manual and interpretation guide. Boston, New England: Medical Centre Health Institute, 1993.
33. Fransella F, Bannister D. A manual for repertory grid technique. London: Academic Press, Harcourt Brace Jovanovich Publishers, 1977.
34. Varni JW, Seid, M, Rode CA. The PedsQL: Measurement model for the Pediatric Quality of Life Inventory. Med Care. 1999; 37: 126-139.
35. Bernard BA, Stebbins GT, Siegel S, Schultz TM, Hays C, Morrissey MJ, et al. Determinants of Quality of Life in children with Gilles de la Tourette Syndrome. Mov Disord. 2009; 24: 1070-1073.
36. Verrips GH, Vogels AGC, Verloove-Vanhorick SP, Fekkes M, Koopman HM, Kamphuis RP, et al. Health-related quality of life measure for children: the TACQOL. J Appl Ther. 1998; 4: 357-360.
37. Cutler D, Murphy T, Gilmour J, Heyman I. The quality of life of young people with Tourette syndrome. Child Care Health Dev. 2009; 35: 496-504.
38. Pringsheim T, Lang A, Kurlan R, Pearce M, Sandor P. Understanding disability in Tourette syndrome. Dev Med Child Neurol. 2009; 51: 468-472.
39. Hao Y, Tian Q, Lu Y, Chai Y, Rao S. Psychometric properties of the Chinese version of the Pediatric Quality of Life Inventory 4.0 generic core scales. Quality of Life Res. 2010; 19: 1229-1233.
40. Müller-Vahl K, Dodel I, Muller N, Munchau A, Reese JP, Balzer-Geldsetzer M, et al. Health-related quality of life in patients with Gilles de la Tourette's syndrome. Mov Disord. 2010; 3: 309-314.
41. EuroQol Group. EuroQoL: A new facility for the measurement of health-related quality of life. Health Policy. 1990; 16: 199-208.
42. Schrag A, Selai C, Jahanshahi M, Quinn NP. The EQ-5D-a generic quality of life measure-is a useful instrument to measure quality of life in patients with Parkinson's disease. J Neurol Neurosurg Psychiatry. 2000; 69: 67-73.
43. Eddy CM, Cavanna AE, Gulisano M, Agodi A, Barchitta M, Calì P, et al. Clinical correlates of quality of life in Tourette syndrome. Mov Disord. 2011; 26:735-738.
44. Eddy CM, Rizzo R, Gulisano M, Agodi A, Barchitta M, Calì P, et al. Quality of life in young people with Tourette syndrome: A controlled study. J Neurol. 2011; 258: 291-301.
45. Conelea CA, Woods DW, Zinner SH, Budman C, Murphy T, Scahill LD, et al. Exploring the impact of chronic tic disorders on youth: results from the Tourette Syndrome Impact Survey. Child Psychiatry HumDev. 2011; 42: 219-242.
46. Lewin AB, Storch EA, Conelea CA, Woods DW, Zinner SH, Budman CL, et al. The roles of anxiety and depression in connecting tic severity and functional impairment. J Anx Disord. 2011; 25: 164-168.
47. Conelea CA, Woods DW, Zinner SH, Budman CL, Murphy TK, Scahill LD, et al. The Impact of Tourette Syndrome in Adults: Results from the Tourette Syndrome Impact Survey. Community Ment Health J. 2012 in press.
48. Cavanna AE, David K, Robertson MM, Orth M. Predictors during childhood of future health-related quality of life in adults with Gilles de la Tourette syndrome. Eur J Paediatr Neurol. 2012 in press.
49. Devinsky O. Outcome research in neurology: Incorporating health-related quality of life. Ann Neurol. 1995; 37: 141-142.
50. Müller J, Wissel J, Kemmler G, Voller B, Bodner T, Schneider A, et al. Craniocervical dystonia questionnaire (CDQ-24): Development and validation of a disease-specific quality of life instrument. J Neurol Neurosurg Psychiatry. 2004; 75: 749-753.
51. Tan EK, Fook-Chong S, Lum S-Y, Thumboo J. Validation of a short disease specific quality of life scale for hemifacial spasm: Correlation with SF-36. J Neurol Neurosurg Psychiatry. 2005; 76: 1707-1710.
52. Cavanna AE, Schrag A, Morley D, Orth M, Robertson MM, Joyce E, et al. The Gilles de la Tourette syndrome-Quality of Life scale (GTS-QOL): development and validation. Neurology 2008; 71: 1410-1416.
53. Janse AJ, Gemke RJBJ, Uiterwaal CSPM, van der Tweel I, Kimpen JLL, Sinnema G. Quality of life: Patients and doctors don't always agree: A meta-analysis. J Clinical Epidemiol. 2004; 57: 653-661.
54. Cavanna AE, Luoni C, Selvini C, Blangiardo R, Eddy CM, Silvestri P, et al. The Gilles de la Tourette Syndrome-Quality of Life Scale for Children and Adolescents (GTS-QOL-C&A): development and validation of the Italian version. Behav Neurol. 2012 in press.