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

Quality of Life Research

Volumn 15, Issue 7, 2006, Pages 1161-1171

  Lach, Lucyna M ^a   Ronen, Gabriel M ^b   Rosenbaum, Peter L ^b   Cunningham, Charles ^b   Boyle, Michael H ^b   Bowman, Shauna ^b   Streiner, David L ^c  

^a MCGILL UNIVERSITY   (Canada)

^b MCMASTER UNIVERSITY   (Canada)

^c Kunin Lunenfeld Applied Research Unit and Department of Food and Nutrition Services and Baycrest Centre for Geriatric Care   (Canada)

Author keywords

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

Indexed keywords

ANTICONVULSIVE AGENT;

BEHAVIOR DISORDER; CLINICAL PRACTICE; COGNITIVE DEFECT; COMORBIDITY; CONVALESCENCE; DISEASE DURATION; DISEASE SEVERITY; EPILEPSY; HUMAN; INTELLECTUAL IMPAIRMENT; MEDICAL RESEARCH; MENTAL DISEASE; ONSET AGE; OUTCOME ASSESSMENT; PRIORITY JOURNAL; QUALITY OF LIFE; REVIEW; SEIZURE SUSCEPTIBILITY; SLEEP DISORDER; SOCIAL ASPECT; SOCIAL PSYCHOLOGY; THEORETICAL MODEL; WELLBEING;

ADOLESCENT; CHILD; COMORBIDITY; EPILEPSY; FEMALE; HEALTH STATUS; HUMANS; MALE; MODELS, THEORETICAL; QUALITY OF LIFE;

EID: 33750586900     PISSN: 09629343     EISSN: None     Source Type: Journal    
DOI: 10.1007/s11136-006-0051-7     Document Type: Review

References (86)

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