Self-reported and parent-reported quality of life of children and adolescents with new-onset epilepsy

Epilepsia

Volumn 52, Issue 8, 2011, Pages 1489-1498

  Taylor, Joanne ^a   Jacoby, Ann ^a   Baker, Gus A ^a   Marson, Anthony G ^a  

^a UNIVERSITY OF LIVERPOOL   (United Kingdom)

Author keywords

Adolescent; Child; Epilepsy; Parents; Quality of life

Indexed keywords

ANTICONVULSIVE AGENT;

ADOLESCENT; ADOLESCENT DISEASE; ARTICLE; ATTITUDE TO HEALTH; BENIGN CHILDHOOD EPILEPSY; CHILD; CHILD BEHAVIOR; CHILD HEALTH; CHILD HEALTH QUESTIONNAIRE; CONTROLLED STUDY; EMOTION; FAMILY; FEMALE; FOCAL EPILEPSY; FRIEND; GENERALIZED EPILEPSY; GRAND MAL SEIZURE; HUMAN; MAJOR CLINICAL STUDY; MALE; NEW ONSET EPILEPSY; PARENT REPORTED QUALITY OF LIFE; PARENTAL ATTITUDE; PRIORITY JOURNAL; PSYCHOLOGICAL WELL BEING; QUALITY OF LIFE; QUESTIONNAIRE; RATING SCALE; RUTTER PARENT SCALE; SCHOOL; SCHOOL CHILD; SELF ESTEEM; SELF REPORT; SELF REPORTED QUALITY OF LIFE; UNSPECIFIED SIDE EFFECT;

ADOLESCENT; CHILD; DEMOGRAPHY; EPILEPSY; FAMILY HEALTH; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; MALE; PARENTS; PERCEPTION; QUALITY OF LIFE; QUESTIONNAIRES; SELF REPORT;

EID: 79960894784     PISSN: 00139580     EISSN: 15281167     Source Type: Journal    
DOI: 10.1111/j.1528-1167.2011.03094.x     Document Type: Article

References (68)

1. Abetz L, Jacoby A, Baker GA, McNulty P,. (2000) Patient-based assessments of quality of life in newly diagnosed patients: validation of the NEWQOL. Epilepsia 41: 119-1128.
2. Andrews FM, Withey SB,. (1976) Social indicators of well-being: Americans' perceptions of life quality. Plenum Press, New York.
3. Asato MR, Manjunath R, Sheth RD, Phelps SJ, Wheless JW, Hovinga CA, Pina-Garza JE, Haskins LS, Zingaro WM,. (2009) Adolescent and caregiver experiences with epilepsy. J Child Neurol 24: 562-571.
4. Austin JK, Smith MS, Risinger MW, McNelis AM,. (1994) Childhood epilepsy and asthma: comparison of quality of life. Epilepsia 35: 608-615. (Pubitemid 24217764)
5. Austin JK, Huster GA, Dunn DW, Risinger MW,. (1996) Adolescents with active or inactive epilepsy or asthma: a comparison of quality of life. Epilepsia 37: 1228-1238. (Pubitemid 26415246)
6. Austin JK, Huberty TJ, Huster GA, Dunn DW,. (1998) Academic achievement in children with epilepsy or asthma. Dev Med Child Neurol 40: 248-255. (Pubitemid 28171803)
7. Austin JK, Harezlak J, Dunn DW, Huster GA, Rose DF, Ambrosius WT,. (2001) Behavior problems in children before first recognized seizures. Pediatrics 107: 115-122. (Pubitemid 32055425)
8. Aytch LS, Hammond R, White C,. (2001) Seizures in infants and young children: an exploratory study of family experiences and needs for information and support. J Neurosci Nurs 33: 278-285.
9. Bailet LL, Turk WR,. (2000) The impact of childhood epilepsy on neurocognitive and behavioral performance: a prospective longitudinal study. Epilepsia 41: 426-431. (Pubitemid 30196608)
10. Baker GA, Francis P, Middleton A, Jacoby A, Defalla B, Young C, Smith D, Chadwick DW,. (1993) Development of a patient-based symptom checklist to quantify adverse events in persons receiving antiepileptic drugs. Epilepsia 34 (Suppl. 6): 18.
11. Baker GA, Frances P, Middleton E, Jacoby A, Schapel GJ, Defalla B,. (1994) Initial development, reliability and validity of a patient-based adverse drug event scale. Epilepsia 35 (Suppl. 7): 80.
12. Baker GA, Jacoby A, Francis P, Chadwick DW,. (1995) The liverpool adverse drug events profile. Epilepsia 36 (Suppl. 3): 59.
13. Baker GA, Jacoby A, Buck D, Stalgis C, Monnet D,. (1997) Quality of life of people with epilepsy: a European study. Epilepsia 38 (3): 353-362. (Pubitemid 27147650)
14. Baker GA, Jacoby A, Buck D, Brooks J, Potts P, Chadwick D,. (2001) The quality of life of older people with epilepsy: findings from a UK community study. Seizure 10: 92-99. (Pubitemid 32452029)
15. Baker GA, Spector S, McGrath Y, Soteriou H,. (2005) Impact of epilepsy in adolescence: a UK controlled study. Epilepsy Behav 6: 556-562. (Pubitemid 40674282)
16. Baker G, Hargis E, Hish M, Mounfield H, Arzimanoglou A, Glauser T, Pellock J, Lund S, on behalf of the International Bureau for Epilepsy. (2008) Perceived impact of epilepsy in teenagers and young adults: an international survey. Epilepsy Behav 12: 395-401.
17. Beilmann A, Napa A, Soot A, Talvik I, Talvik T,. (1999) Prevalence of childhood epilepsy in Estonia. Epilepsia 40: 1011-1019. (Pubitemid 29316059)
18. Benavente-Aguilar I, Morales-Blanquez C, Rubio EA, Rey JM,. (2004) Quality of life of adolescents suffering from epilepsy living in the community. J Paediatr Child Health 40: 110-113. (Pubitemid 38446421)
19. Berg AT, Smith SN, Frobish D, Levy SR, Testa FM, Beckerman B, Shinnar S,. (2005) Special education needs of children with newly diagnosed epilepsy. Dev Med Child Neurol 47: 749-753. (Pubitemid 41600074)
20. Bowling A,. (1991) Measuring health: a review of quality of life measurement scales. Open University Press, Buckingham.
21. Bradshaw J, Richardson D,. (2009) An index of child well-being in Europe. Child Indic Res 2: 319-351.
22. Bullinger M, Brutt AL, Erhart M, Ravens-Sieberer U,. (2008) Psychometric properties of the KINDL-R questionnaire: results of the BELLA study. Eur Child Adolesc Psychiatry 17 (Suppl. 1): 125-132.
23. Carpay HA, Vermeulen J, Stroink H, Brouwer OF, Peters AC, van Donselaar CA, Aldenkamp AP, Arts WF,. (1997) Disability due to restrictions in childhood epilepsy. Dev Med Child Neurol 39: 521-526. (Pubitemid 27371183)
24. Connolly AM, Northcott E, Cairns DR, McIntyre J, Christie J, Berroya A, Lawson JA, Bleasel AF, Bye AME,. (2006) Quality of life of children with benign rolandic epilepsy. Pediatr Neurol 35 (4): 240-245. (Pubitemid 44397428)
25. Cramer JA, Westbrook LE, Devinsky O, Perrine K, Glassman MB, Camfield C,. (1999) Development of the quality of life in epilepsy inventory for adolescents: the QOLIE-AD-48. Epilepsia 40: 1114-1121. (Pubitemid 29372627)
26. de la Loge C, Hunter SJ, Schiemann J, Yang H,. (2010) Assessment of behavioural and emotional functioning using standardised instruments in children and adolescents with partial-onset seizures treated with adjunctive levetiracetam in a randomised, placebo-controlled trial. Epilepsy Behav 18: 291-298.
27. Devinsky O, Westbrook L, Cramer J, Glassman M, Perrine K, Camfield C,. (1999) Risk factors for poor health-related quality of life in adolescents with epilepsy. Epilepsia 40: 1715-1720.
28. Dunn DW, Austin JK, Huster GA,. (1997) Behaviour problems in children with new-onset epilepsy. Seizure 6: 283-287. (Pubitemid 27399777)
29. Elander J, Rutter M,. (1996) An update on the status of the Rutter parents' and Teachers' scales. Child Psychol Psychiatry Review 1 (1): 31-35.
30. Elliott IM, Lach L, Smith ML,. (2005) I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life. Epilepsy Behav 7: 664-678. (Pubitemid 43013013)
31. Ellis N, Upton D, Thompson P,. (2000) Epilepsy and the family: a review of current literature. Seizure 9: 22-30. (Pubitemid 30099232)
32. Gilliam F, Wyllie E, Kashden J, Faught E, Kotagal P, Bebin M, Wise M, Comair Y, Morawetz R, Kuzniecky R,. (1997) Epilepsy surgery outcome: comprehensive assessment in children. Neurology 48: 1368-1374. (Pubitemid 27240566)
33. Hamiwka L, Singh N, Niosi J, Wirrell E,. (2008) Perceived health in children presenting with a "first seizure". Epilepsy Behav 13: 485-488.
34. Hoare P,. (1984) The development of psychiatric disorder among schoolchildren with epilepsy. Dev Med Child Neurol 26: 3-13. (Pubitemid 14220480)
35. Jacoby A, Austin JK,. (2007) Social stigma for adults and children with epilepsy. Epilepsia 48 (Suppl. 9): 6-9. (Pubitemid 350198218)
36. Jacoby A, Baker GA,. (2008) Quality-of-life trajectories in epilepsy: a review of the literature. Epilepsy Behav 12: 557-571.
37. Jacoby A, Gamble C, Doughty J, Marson A, Chadwick D, on behalf of the Medical Research Council MESS Study Group. (2007) Qualiy of life outcomes of immediate or delayed treatment of early epilepsy and single seizures. Neurology 68: 1188-1196. (Pubitemid 46608466)
38. Landgraf JM, Abetz L, Ware JE,. (1996) The child health questionnaire users' manual. The Health Institute, New England Medical Center, Boston, MA.
39. Landgraf JM, Maunsell E, Nixon Speechley K, Bullinger M, Campbell S, Abetz L, Ware JE,. (1998) Canadian-French, German and UK versions of the Child Health Questionnaire: methodology and preliminary item scaling results. Qual Life Res 7: 443-445.
40. Larsson K, Eeg-Olofsson O,. (2006) A population based study of epilepsy in children from a Swedish county. Eur J Paediatr Neurol 10: 107-113. (Pubitemid 44041208)
41. Loy B, Warner-Czyz AD, Tong L, Tobey EA, Roland PS,. (2010) The children speak: an examination of the quality of life of pediatric cochlear implant users. Otolaryngol Head Neck Surg 142: 247-253.
42. Lv R, Wu L, Jin L, Lu Q, Wang M, Qu Y, Liu H,. (2009) Depression, anxiety and quality of life in parents of children with epilepsy. Acta Neurol Scand 120: 335-341.
43. MacLeod JS, Austin JK,. (2003) Stigma in the lives of adolescents with epilepsy: a review of the literature. Epilepsy Behav 4: 112-117. (Pubitemid 37184581)
44. Marson AG, Al-Kharusi AM, Alwaidh M, Appleton R, Baker GA, Chadwick DW, Cramp C, Cockerell OC, Cooper PN, Doughty J, Eaton B, Gamble C, Goulding PJ, Howell SJ, Hughes A, Jackson M, Jacoby A, Kellett M, Lawson GR, Leach JP, Nicolaides P, Roberts R, Shackley P, Shen J, Smith DF, Smith PE, Smith CT, Vanoli A, Williamson PR,. (2007a) The SANAD study of effectiveness of carbamazepine, gabapentin, lamotrigine, oxcarbazepine, or topiramate for treatment of partial epilepsy: an unblinded randomised controlled trial. Lancet 369: 1000-1015. (Pubitemid 46436124)
45. Marson AG, Al-Kharusi AM, Alwaidh M, Appleton R, Baker GA, Chadwick DW, Cramp C, Cockerell OC, Cooper PN, Doughty J, Eaton B, Gamble C, Goulding PJ, Howell SJ, Hughes A, Jackson M, Jacoby A, Kellett M, Lawson GR, Leach JP, Nicolaides P, Roberts R, Shackley P, Shen J, Smith DF, Smith PE, Smith CT, Vanoli A, Williamson PR,. (2007b) The SANAD study of effectiveness of valproate, lamotrigine, or topiramate for generalised and unclassifiable epilepsy: an unblinded randomised controlled trial. Lancet 369: 1016-1026. (Pubitemid 46436125)
46. Miller V, Palermo TM, Grewe SD,. (2003) Quality of life in pediatric epilepsy: demographic and disease-related predictors and comparison with healthy controls. Epilepsy Behav 4: 36-42. (Pubitemid 36546451)
47. Modi AC, King AS, Monahan SR, Koumoutsos JE, Morita DA, Glauser TA,. (2009) Even a single seizure negatively impacts pediatric health-related quality of life. Epilepsia 50: 2110-2116.
48. Morris J, Coyle D,. (1994) Quality of life questionnaires in cancer clinical trials: imputing missing values. Psychoncology 3: 215-222.
49. Muller-Godeffroy E, Treichel S, Wagner VM,. (2009) Investigation of quality of life and family burden issues during insulin pump therapy in children with Type 1 diabetes mellitus-a large-scale multicentre pilot study. Diabet Med 26: 493-501.
50. Otero S,. (2009) Psychopathology and psychological adjustment in children and adolescents with epilepsy. World J Pediatr 5: 12-17.
51. Raty LK, Wilde Larsson BM, Soderfeldt BA,. (2003) Health-related quality of life in youth: a comparison between adolescents and young adults with uncomplicated epilepsy and healthy controls. J Adolesc Health 33: 252-258. (Pubitemid 37163553)
52. Ravens-Sieberer U, Bullinger M,. (1998) Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results. Qual Life Res 7: 399-407. (Pubitemid 28343449)
53. Ravens-Sieberer U, Bullinger M,. (2000) KINDL R: questionnaire for measuring health-related quality of life in children and adolescents-Revised version, Manual.
54. Ravens-Sieberer U, Bullinger M,. (2001) The revised KINDL-R: final results on reliability, validity and responsiveness of a modular HRQOL instrument for children and adolescents. Qual Life Res 10 (3): 199.
55. Rutter M, Graham P, Yule W,. (1970) A neuropsychiatric study in childhood. Clinics in developmental medicine nos 35/36 ed. Spastics International and Heinemann Medical, London.
56. Sabaz M, Cairns DR, Lawson JA, Bleasel AF, 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: 621-628. (Pubitemid 32453645)
57. Sabaz M, Cairns DR, Bleasel AF, Lawson JA, Grinton B, Scheffer IE, Bye AME,. (2003) The health-related quality of life of childhood epilepsy syndromes. J Paediatr Child Health 39: 690-696.
58. Seidenberg M, Beck N, Geisser M, Giordani B, Sackellares JC, Berent S, Dreifuss FE, Boll TJ,. (1986) Academic achievement of children with epilepsy. Epilepsia 27: 753-759. (Pubitemid 17226918)
59. Sherman EM, Griffiths SY, Akdag S, Connolly MB, Slick DJ, Wiebe S,. (2008) Sociodemographic correlates of health-related quality of life in pediatric epilepsy. Epilepsy Behav 12: 96-101. (Pubitemid 350246356)
60. Shore CP, Austin JK, Huster GA, Dunn DW,. (2002) Identifying risk factors for maternal depression in families of adolescents with epilepsy. J Spec Pediatr Nurs 7: 71-80.
61. Sidenvall R, Forsgren L, Heijbel J,. (1996) Prevalence and characteristics of epilepsy in children in northern Sweden. Seizure 5: 139-146. (Pubitemid 26232352)
62. Sillanpää M,. (2004) Learning disability: occurrence and long-term consequences in childhood-onset epilepsy. Epilepsy Behav 5 (6): 937-944. (Pubitemid 40003916)
63. Smith ML, Elliott IM, Lach L,. (2002) Cognitive skills in children with intractable epilepsy: comparison of surgical and nonsurgical candidates. Epilepsia 43: 631-637. (Pubitemid 34627723)
64. Stevanovic D,. (2007) Health-related quality of life in adolescents with well-controlled epilepsy. Epilepsy Behav 10: 571-575. (Pubitemid 46772879)
65. Terra VC, Cysneiros RM, Schwartzman JS, Teixeira MCTV, Arida RM, Cavalheiro EA, Scorza FA, Albuquerque M,. (2011) Mothers of children with cerebral palsy with or without epilepsy: a quality of life perspective. Disabil Rehabil 33: 384-388.
66. Wagner VM, Muller-Godeffroy E, von SS, Hager S, Thyen U,. (2005) Age, metabolic control and type of insulin regime influences health-related quality of life in children and adolescents with type 1 diabetes mellitus. Eur J Pediatr 164: 491-496. (Pubitemid 41073815)
67. Ware J, Snow K, Kosinski M, Gandek B,. (1993) SF-36 health survey: manual and interpretation guide. Nimrod Press, Boston.
68. Westbrook LE, Bauman LJ, Shinnar S,. (1992) Applying stigma theory to epilepsy: a test of a conceptual model. J Pediatr Psychol 17: 633-649.