Quality of Life Research

, Volume 15, Issue 7, pp 1161–1171 | Cite as

Health-related quality of life in youth with epilepsy: Theoretical model for clinicians and researchers. Part I: The role of epilepsy and co-morbidity

  • Lucyna M. Lach
  • Gabriel M. Ronen
  • Peter L. Rosenbaum
  • Charles Cunningham
  • Michael H. Boyle
  • Shauna Bowman
  • David L. Streiner


Children and adolescents with epilepsy are at increased risk for poor health-related quality of life (HRQL) even in the absence of active seizures. Clinicians who aim to achieve optimal seizure control also need to focus on improving HRQL. This can only be accomplished by recognizing how different features of the epilepsy itself, co-morbid conditions, as well as psychosocial factors can all make a difference to HRQL. These psychosocial factors include child, family and community/society variables that play a role in the well-being of these children. Conceptual models are relevant insofar as they provide us with a basis for hypothesizing the causal processes that lead to improved HRQL. They delineate what is meant by HRQL and highlight factors relevant to this important outcome. Researchers can use such models to test statistically and clinically relevant relationships. Clinicians can use this knowledge to direct the planning and implementation of services that are informed by these relationships, critically evaluate and then choose HRQL measures for use in clinical practice that most closely approximate what they understand HRQL is. The purpose of this review is to identify what is meant by HRQL as well as outline the theoretical and empirical basis for what it is about epilepsy, co-morbidity, and its treatment that we believe make a difference to HRQL.


Adolescents Children Health-related quality of life Outcome research Psychosocial adjustment 


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. 1.
    Ronen GM, Streiner DL and Rosenbaum P (2003). Health-related quality of life in childhood epilepsy: Moving beyond seizure control with minimal adverse effects. Heal Qual Life Outcomes 1: 36CrossRefGoogle Scholar
  2. 2.
    Baker GA, Camfield C, Camfield P, Cramer JA, Elger CE, Johnson AL, Martinsda Silva A, Meinardi H, Munari C, Perucca E and Thorbecke R (1998). Commission on outcome measurement in epilepsy, 1994–1997: Final report. Epilepsia 39(2): 213–231PubMedCrossRefGoogle Scholar
  3. 3.
    Marson AG, Kadir ZA, Hutton JL and Chadwick DW (1997). The new antiepileptic drugs: A systematic review of their efficacy and tolerability. Epilepsia 38(8): 859–880PubMedCrossRefGoogle Scholar
  4. 4.
    Raeburn JM and Rootman I (1996). Quality of life and health promotion. In: Renwick, R, Brown, I and Nagler, M (eds) Quality of Life in Health Promotion and Rehabilitation: Conceptual Approaches, Issues, and Applications, pp 14–25. Sage Publications, Thousand OaksGoogle Scholar
  5. 5.
    World Health Organization (WHO). International Classification of Functioning, Disability and Health. Retrieved on November 25, 2004 from World Health Organization website http://www3.who.int/icf/icftemplate.cfm; Beginner’s Guide http://www3.who.int/icf/beginners/bg.pdf 2004Google Scholar
  6. 6.
    Jacoby A (2000). Theoretical and methodological issues in measuring quality of life. In: Baker, GA and Jacoby, A (eds) Quality of Life in Epilepsy: Beyond Seizure Counts in Assessment and Treatment, pp 43–64. Harwood Academic Publishers, Amsterdam, The NetherlandsGoogle Scholar
  7. 7.
    Rapley M (2003). Quality of Life Research: A Critical Introduction. Sage Publications, LondonGoogle Scholar
  8. 8.
    Bowling A (1995). What things are important in people’s lives? A survey of the public’s judgements to inform scales of health related quality of life. Soc Sci Med 41(10): 1447–1462PubMedCrossRefGoogle Scholar
  9. 9.
    Ronen GM, Streiner DL and Rosenbaum P (2003). Canadian Pediatric Epilepsy Network. Health-related quality of life in children with epilepsy: Development and validations of self-report and parent-proxy measures. Epilepsia 44: 598–612PubMedCrossRefGoogle Scholar
  10. 10.
    Ronen GM, Rosenbaum P, Law M and Streiner DL (2001). Health-related quality of life in childhood disorders: A modified focus group technique to involve children. Qual Life Res 10: 71–79PubMedCrossRefGoogle Scholar
  11. 11.
    Ronen GM, Rosenbaum P, Law M and Streiner DL (1999). Health-related quality of life in childhood epilepsy: The results of children’s participation in identifying the components. Dev Med Child Neurol 41: 554–559PubMedCrossRefGoogle Scholar
  12. 12.
    Cowan J and Baker G (2004). A review of subjective impact measures for use with children and adolescents with epilepsy. Qual Life Res 13: 1455–1443CrossRefGoogle Scholar
  13. 13.
    McEwan MJ, Espie CA and Metcalfe J (2004). A systematic review of the contribution of qualitative research to the study of quality of life children and adolescents with epilepsy. Seizure 13: 3–14PubMedCrossRefGoogle Scholar
  14. 14.
    Yam WKL, Chow SMK, Ronen GM. Chinese version of the parent-proxy health-related quality of life measure for children with epilepsy: Translation, cross-cultural adaptation, and reliability studies. Epilepsy & Behavior, 2006, in press Google Scholar
  15. 15.
    Wallander JL, Schmitt M and Koot HM (2001). Quality of life measurement in children and adolescents: Issues, instruments, and applications. J Clin Psychol 57: 571–585PubMedCrossRefGoogle Scholar
  16. 16.
    Wallander JL (1992). Theory-driven research in pediatric psychology: A little bit on why and how. J Pediatr Psychol 17: 521–535PubMedCrossRefGoogle Scholar
  17. 17.
    Chorpita BF, Barlow DH, Albano AM and Daleiden EL (1998). Methodological strategies in child clinical trials: Advancing the efficacy and effectiveness of psychosocial treatments. J Abnorm Child Psychol 26: 7–16PubMedCrossRefGoogle Scholar
  18. 18.
    Bronfenbrenner U (1979). The Ecology of Human Development. Harvard University Press, Cambridge, MAGoogle Scholar
  19. 19.
    (1968). General Systems Theory. Brazilier, Inc, New YorkGoogle Scholar
  20. 20.
    Baron RM and Kenny DA (1986). The moderator-mediator variable distinction in social psychological research: Conceptual, strategic and statistical considerations. J Personality Social Psychol 51: 1173–1182CrossRefGoogle Scholar
  21. 21.
    King G, King S, Rosenbaum P and Goffin R (1999). Family-centred caregiving and well-being of parents of children with disabilities: Linking process with outcome. J Pediatr Psychol 24: 41–52CrossRefGoogle Scholar
  22. 22.
    Raina P, O’Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, Swinton M, Zhu B, Wood E, King S, King G. The Health and Well-being of Caregivers of Children with Cerebral Palsy: What are the Determinants? Pediatrics (in press)Google Scholar
  23. 23.
    Benavente-Aguilar I, Morales-Blanquez C, Rubio EA and Rey JM (2004). Quality of life of adolescents suffering from epliepsy living in the community. J Pediatr Psychol 40: 110–113Google Scholar
  24. 24.
    Lavigne JV and Faier-Routman J (1993). Correlates of psychological adjustment to pediatric physical disorders: A meta-analytic review and comparison with existing models. J Dev Behav Pediatr 14: 117–123PubMedCrossRefGoogle Scholar
  25. 25.
    Sabaz M, Cairns DR, Bleasel AF, Lawson JA, Grinton B, Scheffer IE and Bye AME (2003). The health-related quality of life of childhood epilepsy syndromes. J Paediatr Child Health 39: 690–696PubMedCrossRefGoogle Scholar
  26. 26.
    Cramer JA and French J (2001). Quantitative assessment of seizure severity for clinical trials: A review of approaches to seizure components. Epilepsia 42: 119–129PubMedCrossRefGoogle Scholar
  27. 27.
    Hommeyer JS, Holmbeck GN, Wills KE and Coers S (1999). Condition severity and psychosocial functioning in preadolescents with spina bifida: Disentangling proximal functional status and distal adjustment outcomes. J Pediat Psychol 24: 499–509CrossRefGoogle Scholar
  28. 28.
    Vickrey BG, Berg AT and Sperling MR (2000). Relationships between seizure severity and health-related quality of life in refractory localization-related epilepsy. Epilepsia 41: 760–764PubMedCrossRefGoogle Scholar
  29. 29.
    Lach LM. Social experiences of children and adolescents diagnosed with intractable epilepsy: Maternal representations. Dissertation Abstracts International, 65 (05), (UMI No. AAT NQ91844) University of Toronto, 2004.Google Scholar
  30. 30.
    Devinsky O, Westbrook L, Cramer J, Glassman M, Perrine K and Camfield C (1999). Risk factors for poor heath-related quality of life in adolescents with epilepsy. Epilepsia 40: 1715–1720PubMedCrossRefGoogle Scholar
  31. 31.
    Austin JK (1988). Childhood epilepsy: Child adaptation and family resources. J Child Adol psychiat Mental Health Nurs 1: 18–24Google Scholar
  32. 32.
    Austin JK, Huster G, Dunn DW and Risinger M (1996). Adolescents with active or inactive epilepsy or asthma: A comparison on quality of life. Epilepsia 37: 1228–1238PubMedCrossRefGoogle Scholar
  33. 33.
    Alwash RH, Hussein MJ and Matloub FF (2000). Symptoms of anxiety and depression among adolescents with seizures in Irbid, Northern Jordan. Seizure 9: 412–416PubMedCrossRefGoogle Scholar
  34. 34.
    Cortesi F, Giannoti F and Ottaviano S (1999). Sleep problems and daytime behavior in childhood idiopathic epilepsy. Epilepsia 40: 1557–1565PubMedCrossRefGoogle Scholar
  35. 35.
    Austin JK, Huberty TJ, Huster GA and Dunn DW (1999). Does academic achievement in children with epilepsy change over time?. Dev Med Child Neurol 41: 473–479PubMedCrossRefGoogle Scholar
  36. 36.
    Carlton-Ford S, Miller R, Brown M, Nealeigh N and Jennings P (1995). Epilepsy and children’s social and psychological adjustment. J Health Social Behavior 36: 285–301CrossRefGoogle Scholar
  37. 37.
    Jacoby A (1992). Epilepsy and the quality of life findings from study of people with well controlled epilepsy. Soc Sci Med 34: 657–666PubMedCrossRefGoogle Scholar
  38. 38.
    Jacoby A, Baker G, Steen N, Potts P and Chadwick DW (1996). The clinical course of epilepsy and its psychosocial correlates: Findings from a UK community study. Epilepsia 37: 148–161PubMedCrossRefGoogle Scholar
  39. 39.
    Baker GA, Gagnon D and McMulty P (1998). The relationship between seizure frequency, seizure type and quality of life: Findings from three European countries. Epilepsy Res 30: 231–240PubMedCrossRefGoogle Scholar
  40. 40.
    Sillanpää M, Haataja L and Shinnar S (2004). Perceived impact of childhood-onset epilepsy on quality of life as an adult. Epilepsia 45: 971–977PubMedCrossRefGoogle Scholar
  41. 41.
    Hermann BP, Whitman S, Hughes JR, Melyn MM and Dell J (1988). Multietiological determinants of psychopathology and social competence in children with epilepsy. Epilepsy Res 3: 51–60CrossRefGoogle Scholar
  42. 42.
    Hoare P and Kerley S (1991). Psychosocial adjustment of children with chronic epilepsy and their families. Dev Med Child Neurol 33: 201–215PubMedGoogle Scholar
  43. 43.
    Sabaz M, Cairns DR, Lawson JA, Nheu N, Bleasel AF and Bye AME (2000). Validation of new quality of life measure for children with epilepsy. Epilepsia 41: 765–774PubMedCrossRefGoogle Scholar
  44. 44.
    Schoenfeld J, Seidenberg M, Woodard A, Hecox K, Mack K and Hermann B (1999). Neuropsychological and behavioral status of children with complex partial seizures. Dev Med Child Neurol 41: 724–731PubMedCrossRefGoogle Scholar
  45. 45.
    Buelow JM, Austin JK, Perkins SM, hen J, Dunn DW and Fastenau PS (2003). Behavior and mental health problems in children with epilepsy and low IQ. Dev Med Child Neurol 45: 683–692PubMedCrossRefGoogle Scholar
  46. 46.
    Agoub M, El-Kadiri M, Chihabeddine Kh, Slassi I and Moussaoui D (2004). Depressive disorders among epileptic patients attending a specialized outpatient clinic. Encephale 30: 40–45PubMedCrossRefGoogle Scholar
  47. 47.
    Shackleton DP, Kasteleijn-Nolst Trenité DGA, Vandenbroucke JP and Westendrop RGJ (2003). Living with epilepsy: Long-term prognosis and psychosocial outcomes. Neurology 61: 64–70PubMedGoogle Scholar
  48. 48.
    Hoare P and Mann H (1994). Self-esteem and behavioral adjustment in children with epilepsy and children with diabetes. J Psychosom Res 38: 859–869PubMedCrossRefGoogle Scholar
  49. 49.
    Austin JK and McDermott N (1988). Parental attitude and coping behaviors in families of children with epilepsy. J Neurosci Nurs 20: 174–179PubMedGoogle Scholar
  50. 50.
    Miller V, Palermo TM and Grewe SD (2003). Quality of life in pediatric epilepsy: Demographic and disease-related predictors and comparison with healthy controls. Epilepsy & Behavior 4: 36–42CrossRefGoogle Scholar
  51. 51.
    Williams J, Steel C, Sharp GB, DelosReyes E, Phillips T, Bates S, Lange B and Griebel ML (2003). Parental anxiety and quality of life in children with epilepsy. Epilepsy & Behavior 4: 483–486CrossRefGoogle Scholar
  52. 52.
    Hoare P and Russell M (1995). The quality of life of children with chronic epilepsy and their families: Preliminary findings with a new assessment measure. Dev Med Child Neurol 37: 689–696PubMedCrossRefGoogle Scholar
  53. 53.
    Brown SW (1994). Quality of life: A view from the playground. Seizure 3(Suppl A): 11–15PubMedGoogle Scholar
  54. 54.
    Sabaz M, Cairns DR, Bleasel AF, Lawson JA, Bleasel AF and Bye AME (2001). The health-related quality of life of children with refractory epilepsy: A comparison of those with and without intellectual disability. Epilepsia 42: 621–628PubMedCrossRefGoogle Scholar
  55. 55.
    Ott D, Siddarth P, Gurbani S, Koh S, Tournay A, Schields D and Caplan R (2003). Behavioral disorders in pediatric epilepsy: Unmet psychiatric needs. Epilepsia 44: 591–597PubMedCrossRefGoogle Scholar
  56. 56.
    Pirio Richardson S, Farias ST, Lima AR and Alsaadi TM (2004). Improvement in seizure control and quality of life in medically refractory epilepsy patients converted from polypharmacy to monotherapy. Epilepsy Behav 5: 343–347PubMedCrossRefGoogle Scholar
  57. 57.
    Sillanpää M (2000). Long-term outcome of epilepsy. Epileptic Disorders 2: 79–88PubMedGoogle Scholar
  58. 58.
    Jalava M, Sillanpää M, Camfield C and Camfield P (1997). Social adjustment and competence 35 years after onset of childhood epilepsy: A prospective study. Epilepsia 38: 708–715PubMedCrossRefGoogle Scholar
  59. 59.
    Kokkonen J, Kokkonen ER, Saukkonen AL and Pennanen P (1997). Psychosocial outcome of young adults with epilepsy in childhood. J Neurol Neurosur Psych 62: 265–268Google Scholar
  60. 60.
    Wakamoto H, Nagao H, Hayashi M and Morimoto T (2000). Long-term medical, educational, and social prognoses of childhood-onset epilepsy: A population-based study in a rural district of Japan. Brain Dev 22: 246–255PubMedCrossRefGoogle Scholar
  61. 61.
    Eriksson KJ and Koivikko MJ (1997). Prevalence, classification and severity of epilepsy and epileptic syndromes in children. Epilepsia 38: 1275–1282PubMedCrossRefGoogle Scholar
  62. 62.
    Waaler PE, Blom BH, Skeidsvoll H and Mykletum A (2000). Prevalence, classification, and severity of epilepsy in children in western Norway. Epilepsia 41: 802–810PubMedCrossRefGoogle Scholar
  63. 63.
    Besag FMC. Childhood epilepsy in relation to mental handicap and behavioural disorders. J Child Psychol Psychiat 2002; 43: 103–131Google Scholar
  64. 64.
    Bjornaes H, Stabell K, Henriksen O and Loyning Y (2001). The effect of refractory epilepsy on intellectual functioning in children and adults. A longitudinal study. Seizure 10: 250–259PubMedCrossRefGoogle Scholar
  65. 65.
    Berg AT, Smith SN and Frobish D (2004). Longitudinal assessment of adaptive behavior in infants and young children with newly diagnosed epilepsy: Influence of etiology, syndrome, and seizure control. Pediatrics 114: 645–650PubMedCrossRefGoogle Scholar
  66. 66.
    Davies S, Heyman I and Goodman R (2003). A population health survey of mental health problems in children with epilepsy. Dev Med Child Neurol 45: 292–295PubMedCrossRefGoogle Scholar
  67. 67.
    Dunn DW, Austin JK, Harezlak J and Ambrosius WT (2003). ADHD and epilepsy in childhood. Dev Med Child Neurol 45: 50–54PubMedGoogle Scholar
  68. 68.
    Ettinger AB, Weisbrot DM and Nolan EE (1998). Symptoms of depression and anxiety in pediatric epilepsy patients. Epilepsia 39: 595–599PubMedCrossRefGoogle Scholar
  69. 69.
    Austin JK, Harezlak J, Dunn WD, Huster GA, Rose DF and Ambrosius WT (2001). Behavior problems in children before first recognized seizures. Pediatrics 107: 115–122PubMedCrossRefGoogle Scholar
  70. 70.
    Perrine K, Hermann BP and Meador KJ (1995). The relationship of neuropsychological functioning to quality of life in Epilepsy. Arch Neurol 52: 997–1003PubMedGoogle Scholar
  71. 71.
    Johnson EK, Jones JE, Seidenberg M and Hermann BP (2004). The relative impact of anxiety, depression, and clinical seizure features on health-related quality of life in epilepsy. Epilepsia 45: 544–550PubMedCrossRefGoogle Scholar
  72. 72.
    Lewinsohn PM, Gotlib IH and Seeley JR (1997). Depression-related psycho-social variables: Are they specific to depression in adolescents. J Abn Psychol 106: 365–375CrossRefGoogle Scholar
  73. 73.
    Camfield PR, Gates R and Ronen G (1984). Comparison of cognitive ability, personality profile, and school success in epileptic children with pure right versus left temporal lobe EEG foci. Ann Neurol 15: 122–126PubMedCrossRefGoogle Scholar
  74. 74.
    Caplan R, Arbelle S, Magharious W and Guthrie D (1998). Psychopathology in pediatric complex partial seizures and primary generalized epilepsy. Dev Med Child Neurol 40: 805–811PubMedCrossRefGoogle Scholar
  75. 75.
    Steffenburg S, Gillberg C and Steffenburg U (1996). Psychiatric disorders in children and adolescents with mental retardation and active epilepsy. Arch Neurol 53: 904–912PubMedGoogle Scholar
  76. 76.
    Stores G, Wiggs L and Campling G (1997). Sleep disorders and their relationship to psychological disturbance in children with epilepsy. Child Care Health Dev 24: 5–19CrossRefGoogle Scholar
  77. 77.
    Hunt SM (1997). The problem of quality of life. Qual Life Res 6: 205–212PubMedGoogle Scholar
  78. 78.
    Austin JK, McBride AB and Davis HW (1984). Parental attitude and adjustment to childhood epilepsy. Nurs Res 33: 92–96PubMedCrossRefGoogle Scholar
  79. 79.
    Austin JK, Patterson JM and Huberty TJ (1991). Development of the coping health inventory for children. J Pediatr Nurs 6: 166–174PubMedGoogle Scholar
  80. 80.
    Austin JK, Risinger MW and Beckett LA (1992). Correlates of behavior problems in children with epilepsy. Epilepsia 33: 1115–1122PubMedCrossRefGoogle Scholar
  81. 81.
    Dunn DW, Austin JK and Huster GA (1997). Behavior problems in children with new-onset epilepsy. Seizure 6: 283–287PubMedCrossRefGoogle Scholar
  82. 82.
    Mims J (1997). Self-esteem, behavior and concerns surrounding epilepsy in siblings of children with epilepsy. J Child Neurol 12: 187–192PubMedCrossRefGoogle Scholar
  83. 83.
    Thomas SV and Bindu VB (1999). Psychosocial and economic problems of parents of children with epilepsy. Seizure 8: 66–69PubMedCrossRefGoogle Scholar
  84. 84.
    Hoare P, Mann H and Dunn S (2000). Parental perception of the quality of life among children with epilepsy or diabetes with a new assessment questionnaire. Qual Life Res 9: 637–644PubMedCrossRefGoogle Scholar
  85. 85.
    Räty LKA, Söderfeldt BA, Larsson G and Wilde Larsson BM (2004). The relationship between illness severity, sociodemographic factors, general self-concept, and illness specific attitude in Swedish adolescents with epilepsy. Seizure 13: 375–382PubMedCrossRefGoogle Scholar

Copyright information

© Springer 2006

Authors and Affiliations

  • Lucyna M. Lach
    • 1
  • Gabriel M. Ronen
    • 2
  • Peter L. Rosenbaum
    • 2
  • Charles Cunningham
    • 3
  • Michael H. Boyle
    • 3
  • Shauna Bowman
    • 3
  • David L. Streiner
    • 4
  1. 1.School of Social Work McGill UniversityMontrealCanada
  2. 2.Departments of PaediatricsFaculty of Health Sciences McMaster UniversityHamiltonCanada
  3. 3.Psychiatry and Behavioral NeuroscienceFaculty of Health Sciences McMaster UniversityHamiltonCanada
  4. 4.Kunin-Lunefeld Applied Research Unit Baycrest Centre for Geriatric CareUniversity of TorontoTorontoCanada

Personalised recommendations