Advertisement

European Child & Adolescent Psychiatry

, Volume 26, Issue 5, pp 603–617 | Cite as

Health-related quality of life, anxiety and depression in parents of adolescents with Gilles de la Tourette syndrome: a controlled study

  • Isabelle JalenquesEmail author
  • Candy Auclair
  • D. Morand
  • G. Legrand
  • Magali Marcheix
  • Clémentine Ramanoel
  • Andreas Hartmann
  • The Syndrome de Gilles de La Tourette Study Group
  • Ph. Derost
Original Contribution

Abstract

Our objectives were to assess health-related quality of life (HRQoL), anxiety, depression of Gilles de la Tourette syndrome (GTS) adolescents’ parents compared to controls; to assess GTS adolescents’ HRQoL compared to controls; to investigate which parental and adolescent variables are associated with poorer parental HRQoL. The controlled study involved GTS outpatients and their parents, adolescent healthy controls matched for gender and age and their parents. Parents’ HRQoL was assessed using SF-36 and WHOQOL-BREF; anxiety, depression using HADS. Adolescents’ HRQoL was assessed by adolescents using VSP-A instrument and by their parents using VSP-P. A total of 75 GTS adolescents, 75 mothers, 63 fathers were compared to 75 control adolescents, 75 mothers, 62 fathers. GTS mothers had worse HRQoL than controls on 5 of the 8 SF-36 dimensions and 1 of the 4 WHOQOL-BREF dimensions, while GTS fathers had worse HRQoL on 2 of the WHOQOL-BREF dimensions. GTS mothers had poorer HRQoL than fathers. GTS mothers had more depression than control mothers and GTS fathers had more anxiety than control fathers. GTS adolescents had worse HRQoL than controls on 5 of the 9 VSP-A dimensions. Factors significantly related to parental HRQoL were anxiety, depression, GTS adolescents’ HRQoL and, concerning mothers, behavioural and emotional adolescents’ problems; concerning fathers, severity of vocal tics, duration since first symptoms. This study provides a better understanding of poorer HRQoL and psychiatric morbidity of GTS adolescents’ parents. Clinicians should pay attention to their emotional well-being and HRQoL and be aware that mothers and fathers are differently affected.

Keywords

Gilles de la Tourette syndrome Tics Health-related quality of life Mental health Adolescents Parents 

Notes

Acknowledgements

The authors thank the patients who participated and J. Watts for advice on the English version. Members of the SYNDROME DE GILLES DE LA TOURETTE Study Group: C. Angonin, C. Auclair, E. Deniau, Ph Derost, L. Gerbaud, A. Hartmann, I. Jalenques, G. Legrand, A. Macleod, M. Marcheix, D. Morand, J. Müllner, C. Ramanoel.

Compliance with ethical standards

Funding

The authors thank the university hospital of Clermont-Ferrand and the French Association of Gilles de la Tourette Syndrome (AFSGT) for their financial support.

Conflict of interest

On behalf of all authors, the corresponding author states that there is no conflict of interest.

References

  1. 1.
    American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders: DSM-5, 5th edn. American Psychiatric Association, Washington, DC, p 947CrossRefGoogle Scholar
  2. 2.
    Scharf JM, Miller LL, Mathews CA, Ben-Shlomo Y (2012) Prevalence of Tourette syndrome and chronic tics in the population-based Avon longitudinal study of parents and children cohort. J Am Acad Child Adolesc Psychiatry 51:192–201. doi: 10.1016/j.jaac.2011.11.004 e5 CrossRefPubMedPubMedCentralGoogle Scholar
  3. 3.
    Cavanna AE, Seri S (2013) Tourette’s syndrome. BMJ 347:f4964CrossRefPubMedGoogle Scholar
  4. 4.
    Rizzo R, Gulisano M, Pellico A et al (2014) Tourette syndrome and comorbid conditions: a spectrum of different severities and complexities. J Child Neurol 29:1383–1389. doi: 10.1177/0883073814534317 CrossRefPubMedGoogle Scholar
  5. 5.
    Storch EA, Merlo LJ, Lack C et al (2007) Quality of life in youth with Tourette’s syndrome and chronic tic disorder. J Clin Child Adolesc Psychol 36:217–227. doi: 10.1080/15374410701279545 CrossRefPubMedGoogle Scholar
  6. 6.
    Bernard BA, Stebbins GT, Siegel S et al (2009) Determinants of quality of life in children with Gilles de la Tourette syndrome. Mov Disord Off J Mov Disord Soc 24:1070–1073. doi: 10.1002/mds.22487 CrossRefGoogle Scholar
  7. 7.
    Eddy CM, Rizzo R, Gulisano M et al (2011) Quality of life in young people with Tourette syndrome: a controlled study. J Neurol 258:291–301. doi: 10.1007/s00415-010-5754-6 CrossRefPubMedGoogle Scholar
  8. 8.
    Jalenques I, Galland F, Malet L et al (2012) Quality of life in adults with Gilles de la Tourette Syndrome. BMC Psychiatry 12:109. doi: 10.1186/1471-244X-12-109 CrossRefPubMedPubMedCentralGoogle Scholar
  9. 9.
    Evans J, Seri S, Cavanna AE (2016) The effects of Gilles de la Tourette syndrome and other chronic tic disorders on quality of life across the lifespan: a systematic review. Eur Child Adolesc Psychiatry. doi: 10.1007/s00787-016-0823-8 PubMedCentralGoogle Scholar
  10. 10.
    Hubka GB, Fulton WA, Shady GA et al (1988) Tourette syndrome: impact on Canadian family functioning. Neurosci Biobehav Rev 12:259–261CrossRefPubMedGoogle Scholar
  11. 11.
    Bawden HN, Stokes A, Camfield CS et al (1998) Peer relationship problems in children with Tourette’s disorder or diabetes mellitus. J Child Psychol Psychiatry 39:663–668CrossRefPubMedGoogle Scholar
  12. 12.
    Dooley JM, Brna PM, Gordon KE (1999) Parent perceptions of symptom severity in Tourette’s syndrome. Arch Dis Child 81:440–441CrossRefPubMedPubMedCentralGoogle Scholar
  13. 13.
    Wilkinson BJ, Newman MB, Shytle RD et al (2001) Family Impact of Tourette’s Syndrome. J Child Fam Stud 10:477–483CrossRefGoogle Scholar
  14. 14.
    Sukhodolsky DG, Scahill L, Zhang H et al (2003) Disruptive behavior in children with Tourette’s syndrome: association with ADHD comorbidity, tic severity, and functional impairment. J Am Acad Child Adolesc Psychiatry 42:98–105. doi: 10.1097/00004583-200301000-00016 CrossRefPubMedGoogle Scholar
  15. 15.
    Conelea CA, Woods DW, Zinner SH et al (2011) Exploring the impact of chronic tic disorders on youth: results from the Tourette Syndrome Impact Survey. Child Psychiatry Hum Dev 42:219–242. doi: 10.1007/s10578-010-0211-4 CrossRefPubMedGoogle Scholar
  16. 16.
    Cooper C, Robertson MM, Livingston G (2003) Psychological morbidity and caregiver burden in parents of children with Tourette’s disorder and psychiatric comorbidity. J Am Acad Child Adolesc Psychiatry 42:1370–1375. doi: 10.1097/01.CHI.0000085751.71002.48 CrossRefPubMedGoogle Scholar
  17. 17.
    Roessner V, Plessen KJ, Rothenberger A et al (2011) European clinical guidelines for Tourette syndrome and other tic disorders. Part II: pharmacological treatment. Eur Child Adolesc Psychiatry 20:173–196. doi: 10.1007/s00787-011-0163-7 CrossRefPubMedPubMedCentralGoogle Scholar
  18. 18.
    Cannon M, Pelham WH, Sallee FR et al (2009) Effects of clonidine and methylphenidate on family quality of life in attention-deficit/hyperactivity disorder. J Child Adolesc Psychopharmacol 19:511–517. doi: 10.1089/cap.2009.0008 CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Verdellen C, van de Griendt J, Hartmann A et al (2011) European clinical guidelines for Tourette syndrome and other tic disorders. Part III: behavioural and psychosocial interventions. Eur Child Adolesc Psychiatry 20:197–207. doi: 10.1007/s00787-011-0167-3 CrossRefPubMedGoogle Scholar
  20. 20.
    Riley AW, Spiel G, Coghill D et al (2006) Factors related to health-related quality of life (HRQoL) among children with ADHD in Europe at entry into treatment. Eur Child Adolesc Psychiatry 15(Suppl 1):I38–I45. doi: 10.1007/s00787-006-1006-9 CrossRefPubMedGoogle Scholar
  21. 21.
    van Oers HA, Haverman L, Limperg PF et al (2014) Anxiety and depression in mothers and fathers of a chronically ill child. Matern Child Health J 18:1993–2002. doi: 10.1007/s10995-014-1445-8 CrossRefPubMedGoogle Scholar
  22. 22.
    Moreira H, Carona C, Silva N et al (2013) Psychological and quality of life outcomes in pediatric populations: a parent-child perspective. J Pediatr 163:1471–1478. doi: 10.1016/j.jpeds.2013.06.028 CrossRefPubMedGoogle Scholar
  23. 23.
    Leplège A, Ecosse E, Verdier A, Perneger TV (1998) The French SF-36 Health Survey: translation, cultural adaptation and preliminary psychometric evaluation. J Clin Epidemiol 51:1013–1023CrossRefPubMedGoogle Scholar
  24. 24.
    Leplège A, Réveillère C, Ecosse E et al (2000) Psychometric properties of a new instrument for evaluating quality of life, the WHOQOL-26, in a population of patients with neuromuscular diseases. L’Encéphale 26:13–22PubMedGoogle Scholar
  25. 25.
    Huang I-C, Wu AW, Frangakis C (2006) Do the SF-36 and WHOQOL-BREF measure the same constructs? Evidence from the Taiwan population. Qual Life Res Int J Qual Life Asp Treat Care Rehabil 15:15–24. doi: 10.1007/s11136-005-8486-9 CrossRefGoogle Scholar
  26. 26.
    Simeoni MC, Auquier P, Antoniotti S et al (2000) Validation of a French health-related quality of life instrument for adolescents: the VSP-A. Qual Life Res Int J Qual Life Asp Treat Care Rehabil 9:393–403CrossRefGoogle Scholar
  27. 27.
    Bjelland I, Dahl AA, Haug TT, Neckelmann D (2002) The validity of the Hospital Anxiety and Depression Scale. An updated literature review. J Psychosom Res 52:69–77CrossRefPubMedGoogle Scholar
  28. 28.
    Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67:361–370CrossRefPubMedGoogle Scholar
  29. 29.
    Achenbach T. M. Integrative guide for the 1991 CBCL/4-18, YSR, and TRF profilesGoogle Scholar
  30. 30.
    Termine C, Balottin U, Rossi G et al (2006) Psychopathology in children and adolescents with Tourette’s syndrome: a controlled study. Brain Dev 28:69–75. doi: 10.1016/j.braindev.2005.04.006 CrossRefPubMedGoogle Scholar
  31. 31.
    Leckman JF, Riddle MA, Hardin MT et al (1989) The Yale Global Tic Severity Scale: initial testing of a clinician-rated scale of tic severity. J Am Acad Child Adolesc Psychiatry 28:566–573. doi: 10.1097/00004583-198907000-00015 CrossRefPubMedGoogle Scholar
  32. 32.
    Scahill L, Riddle MA, McSwiggin-Hardin M et al (1997) Children’s Yale-Brown Obsessive Compulsive Scale: reliability and validity. J Am Acad Child Adolesc Psychiatry 36:844–852. doi: 10.1097/00004583-199706000-00023 CrossRefPubMedGoogle Scholar
  33. 33.
    Perneger TV (1998) What’s wrong with Bonferroni adjustments. BMJ 316:1236–1238CrossRefPubMedPubMedCentralGoogle Scholar
  34. 34.
    Feise RJ (2002) Do multiple outcome measures require p value adjustment? BMC Med Res Methodol 2:8CrossRefPubMedPubMedCentralGoogle Scholar
  35. 35.
    Rose MS, Koshman ML, Spreng S, Sheldon R (1999) Statistical issues encountered in the comparison of health-related quality of life in diseased patients to published general population norms: problems and solutions. J Clin Epidemiol 52:405–412CrossRefPubMedGoogle Scholar
  36. 36.
    Cavanna AE, Luoni C, Selvini C et al (2013) 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 27:95–103. doi: 10.3233/BEN-120274 CrossRefPubMedPubMedCentralGoogle Scholar
  37. 37.
    Cavanna AE, Luoni C, Selvini C et al (2013) Disease-specific quality of life in young patients with Tourette syndrome. Pediatr Neurol 48:111–114. doi: 10.1016/j.pediatrneurol.2012.10.006 CrossRefPubMedGoogle Scholar
  38. 38.
    Rizzo R, Gulisano M, Calì PV, Curatolo P (2012) Long term clinical course of Tourette syndrome. Brain Dev 34:667–673. doi: 10.1016/j.braindev.2011.11.006 CrossRefPubMedGoogle Scholar
  39. 39.
    Eddy CM, Cavanna AE, Gulisano M et al (2011) Clinical correlates of quality of life in Tourette syndrome. Mov Disord Off J Mov Disord Soc 26:735–738. doi: 10.1002/mds.23434 CrossRefGoogle Scholar
  40. 40.
    ten Hoedt AE, Maurice-Stam H, Boelen CCA et al (2011) Parenting a child with phenylketonuria or galactosemia: implications for health-related quality of life. J Inherit Metab Dis 34:391–398. doi: 10.1007/s10545-010-9267-3 CrossRefPubMedPubMedCentralGoogle Scholar
  41. 41.
    Lv R, Wu L, Jin L et al (2009) Depression, anxiety and quality of life in parents of children with epilepsy. Acta Neurol Scand 120:335–341. doi: 10.1111/j.1600-0404.2009.01184.x CrossRefPubMedGoogle Scholar
  42. 42.
    Arafa MA, Zaher SR, El-Dowaty AA, Moneeb DE (2008) Quality of life among parents of children with heart disease. Health Qual Life Outcomes 6:91. doi: 10.1186/1477-7525-6-91 CrossRefPubMedPubMedCentralGoogle Scholar
  43. 43.
    Abedi MR, Vostanis P (2010) Evaluation of quality of life therapy for parents of children with obsessive-compulsive disorders in Iran. Eur Child Adolesc Psychiatry 19:605–613. doi: 10.1007/s00787-010-0098-4 CrossRefPubMedGoogle Scholar
  44. 44.
    Rudolph M, Kummer P, Eysholdt U, Rosanowski F (2004) Speech impaired children. Anxiety, depression and quality of life of the mothers. HNO 52:561–568. doi: 10.1007/s00106-003-0984-x CrossRefPubMedGoogle Scholar
  45. 45.
    Mazzone L, Postorino V, De Peppo L et al (2013) Paediatric non-alcoholic Fatty liver disease: impact on patients and mothers’ quality of life. Hepat Mon 13:e7871. doi: 10.5812/hepatmon.7871 CrossRefPubMedPubMedCentralGoogle Scholar
  46. 46.
    Fabre A, Baumstarck K, Cano A et al (2013) Assessment of quality of life of the children and parents affected by inborn errors of metabolism with restricted diet: preliminary results of a cross-sectional study. Health Qual Life Outcomes 11:158. doi: 10.1186/1477-7525-11-158 CrossRefPubMedPubMedCentralGoogle Scholar
  47. 47.
    Ben Thabet J, Sallemi R, Hasïri I et al (2013) Psycho-emotional impact of a child’s disability on parents. Arch Pédiatrie Organe Off Sociéte Fr Pédiatrie 20:9–16. doi: 10.1016/j.arcped.2012.10.024 CrossRefGoogle Scholar
  48. 48.
    Lawoko S, Soares JJF (2003) Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Qual Life Res Int J Qual Life Asp Treat Care Rehabil 12:655–666CrossRefGoogle Scholar
  49. 49.
    Hatzmann J, Heymans HSA, Ferrer-i-Carbonell A et al (2008) Hidden consequences of success in pediatrics: parental health-related quality of life—results from the Care Project. Pediatrics 122:e1030–e1038. doi: 10.1542/peds.2008-0582 CrossRefPubMedGoogle Scholar
  50. 50.
    Malerbi FEK, Negrato CA, Gomes MB, Brazilian Type 1 Diabetes Study Group (BrazDiab1SG) (2012) Assessment of psychosocial variables by parents of youth with type 1 diabetes mellitus. Diabetol Metab Syndr 4:48. doi: 10.1186/1758-5996-4-48 CrossRefPubMedPubMedCentralGoogle Scholar
  51. 51.
    Press J, Neumann L, Uziel Y et al (2002) Assessment of quality of life of parents of children with juvenile chronic arthritis. Clin Rheumatol 21:280–283. doi: 10.1007/s100670200074 CrossRefPubMedGoogle Scholar
  52. 52.
    Hedov G, Annerén G, Wikblad K (2000) Self-perceived health in Swedish parents of children with Down’s syndrome. Qual Life Res Int J Qual Life Asp Treat Care Rehabil 9:415–422CrossRefGoogle Scholar
  53. 53.
    Naitoh Y, Kawauchi A, Soh J et al (2012) Health related quality of life for monosymptomatic enuretic children and their mothers. J Urol 188:1910–1914. doi: 10.1016/j.juro.2012.07.012 CrossRefPubMedGoogle Scholar
  54. 54.
    Miller LL, Scharf JM, Mathews CA, Ben-Shlomo Y (2014) Tourette syndrome and chronic tic disorder are associated with lower socio-economic status: findings from the Avon Longitudinal Study of Parents and Children cohort. Dev Med Child Neurol 56:157–163. doi: 10.1111/dmcn.12318 CrossRefPubMedGoogle Scholar
  55. 55.
    Aldred M, Cavanna AE (2015) Tourette syndrome and socioeconomic status. Neurol Sci 36:1643–1649. doi: 10.1007/s10072-015-2223-0 CrossRefPubMedGoogle Scholar
  56. 56.
    Manuel J, Naughton MJ, Balkrishnan R et al (2003) Stress and adaptation in mothers of children with cerebral palsy. J Pediatr Psychol 28:197–201CrossRefPubMedGoogle Scholar
  57. 57.
    Li Y, Ji C-Y, Qin J, Zhang Z-X (2008) Parental anxiety and quality of life of epileptic children. Biomed Environ Sci BES 21:228–232. doi: 10.1016/S0895-3988(08)60034-3 CrossRefPubMedGoogle Scholar
  58. 58.
    Carter AS, O’Donnell DA, Schultz RT et al (2000) Social and emotional adjustment in children affected with Gilles de la Tourette’s syndrome: associations with ADHD and family functioning. Attention deficit hyperactivity disorder. J Child Psychol Psychiatry 41:215–223CrossRefPubMedGoogle Scholar
  59. 59.
    Saarni SI, Suvisaari J, Sintonen H et al (2007) Impact of psychiatric disorders on health-related quality of life: general population survey. Br J Psychiatry J Ment Sci 190:326–332. doi: 10.1192/bjp.bp.106.025106 CrossRefGoogle Scholar
  60. 60.
    Wilson IB, Cleary PD (1995) Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA 273:59–65CrossRefPubMedGoogle Scholar
  61. 61.
    Upton P, Lawford J, Eiser C (2008) Parent-child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res Int J Qual Life Asp Treat Care Rehabil 17:895–913. doi: 10.1007/s11136-008-9350-5 CrossRefGoogle Scholar
  62. 62.
    Gutierrez-Colina AM, Eaton CK, Lee JL et al (2015) Health-Related Quality of Life and psychosocial functioning in children with Tourette syndrome: parent-child agreement and comparison to healthy norms. J Child Neurol 30:326–332. doi: 10.1177/0883073814538507 CrossRefPubMedGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2016

Authors and Affiliations

  • Isabelle Jalenques
    • 1
    • 2
    Email author
  • Candy Auclair
    • 3
    • 4
  • D. Morand
    • 5
  • G. Legrand
    • 1
    • 2
  • Magali Marcheix
    • 2
  • Clémentine Ramanoel
    • 2
  • Andreas Hartmann
    • 6
  • The Syndrome de Gilles de La Tourette Study Group
  • Ph. Derost
    • 7
  1. 1.Psychiatrie de l’Adulte A et Psychologie médicale Pôle de PsychiatrieCHU Clermont-FerrandClermont-Ferrand Cedex1France
  2. 2.Clermont Université, Université d’Auvergne Clermont 1, UFR MédecineClermont-FerrandFrance
  3. 3.Santé PubliqueCHU Clermont-FerrandClermont-Ferrand Cedex 1France
  4. 4.Clermont Université, Université d’Auvergne ClermontClermont-FerrandFrance
  5. 5.DRCICHU Clermont-FerrandClermont-Ferrand Cedex 1France
  6. 6.Département de Neurologie, Pôle des Maladies du Système NerveuxGroupe Hospitalier Pitié-Salpêtrière, Centre de référence ‘Syndrome Gilles de la Tourette’ParisFrance
  7. 7.NeurologieCHU Clermont-FerrandClermont-Ferrand Cedex 1France

Personalised recommendations