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Quality of Life and Psychosocial Outcomes in Children Following Epilepsy Surgery

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Long-Term Outcomes of Epilepsy Surgery in Adults and Children

Abstract

Quality of life (QOL) and psychosocial functioning of children diminishes with the onset of seizures. The adult outcomes of patients show some improvements with good seizure control but impairments in some areas remain. Epilepsy surgery in childhood has the potential to eliminate seizures, which may lead to improvements in QOL and psychosocial functioning. This chapter reviews recent work on the long-term QOL and psychosocial outcomes following epilepsy surgery in childhood. The few studies that have examined these outcomes find overall improvements in QOL, but are not always concordant as to which QOL domains show improvements. Similarly, although improvements are found in overall psychosocial functioning, there is no consensus on which domains improve. Improvements in QOL and psychosocial functioning, when evident, are consistently associated with seizure freedom. More recently, mood and affective symptoms have been found to be integral in ratings of QOL. Further work is needed to identify specific affective symptoms that lead to diminished QOL and psychosocial functioning and to identify other variables that may be involved, such as IQ or memory, and family function.

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References

  1. Cramer JA. Principles of health-related quality of life: assessment in clinical trials. Epilepsia. 2002;43(9):1084–95.

    Article  PubMed  Google Scholar 

  2. Speechley KN. What if quality of life better expressed outcomes for epilepsy? In: Arts WF, Arzimanoglou A, Brouwer OF, Camfield C, Camfield P, editors. Outcomes of childhood epilepsies. Montrouge: John Libbey Eurotext; 2013. p. 253–62.

    Google Scholar 

  3. Perry MS, Duchowny M. Surgical versus medical treatment for refractory epilepsy: outcomes beyond seizure control. Epilepsia. 2013;54(12):2060–70.

    Article  PubMed  Google Scholar 

  4. Thurman DJ, Beghi E, Begley CE, Berg AT, Buchhalter JR, Ding D, et al. Standards for epidemiologic studies and surveillance of epilepsy. Epilepsia. 2011;52 Suppl 7:2–26.

    Article  CAS  PubMed  Google Scholar 

  5. World Health Organization. WHOQOL: measuring quality of life. Geneva: World Health Organization; 1997.

    Google Scholar 

  6. Baum KT, Byars AW, deGrauw TJ, Johnson CS, Perkins SM, Dunn DW, et al. Temperament, family environment, and behavior problems in children with new-onset seizures. Epilepsy Behav. 2007;10(2):319–27.

    Article  PubMed Central  PubMed  Google Scholar 

  7. Fastenau PS, Johnson CS, Perkins SM, Byars AW, deGrauw TJ, Austin JK, et al. Neuropsychological status at seizure onset in children: risk factors for early cognitive deficits. Neurology. 2009;73(7):526–34.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  8. Sillanpaa M, Jalava M, Kaleva O, Shinnar S. Long-term prognosis of seizures with onset in childhood. N Engl J Med. 1998;338(24):1715–22.

    Article  CAS  PubMed  Google Scholar 

  9. Camfield C, Camfield P. Twenty years after childhood-onset symptomatic generalized epilepsy the social outcome is usually dependency or death: a population-based study. Dev Med Child Neurol. 2008;50(11):859–63.

    Article  PubMed  Google Scholar 

  10. Camfield CS, Camfield PR. Juvenile myoclonic epilepsy 25 years after seizure onset: a population-based study. Neurology. 2009;73(13):1041–5.

    Article  PubMed  Google Scholar 

  11. Camfield P, Camfield C. Idiopathic generalized epilepsy with generalized tonic-clonic seizures (IGE-GTC): a population-based cohort with >20 year follow up for medical and social outcome. Epilepsy Behav. 2010;18(1–2):61–3.

    Article  PubMed  Google Scholar 

  12. Austin JK, Smith MS, Risinger MW, McNelis AM. Childhood epilepsy and asthma: comparison of quality of life. Epilepsia. 1994;35(3):608–15.

    Article  CAS  PubMed  Google Scholar 

  13. Wang J, Wang Y, Wang LB, Xu H, Zhang XL. A comparison of quality of life in adolescents with epilepsy or asthma using the Short-Form Health Survey (SF-36). Epilepsy Res. 2012;101(1–2):157–65.

    Article  PubMed  Google Scholar 

  14. Taylor J, Jacoby A, Baker GA, Marson AG. Self-reported and parent-reported quality of life of children and adolescents with new-onset epilepsy. Epilepsia. 2011;52(8):1489–98.

    Article  PubMed  Google Scholar 

  15. Arunkumar G, Wyllie E, Kotagal P, Ong HT, Gilliam F. Parent- and patient-validated content for pediatric epilepsy quality-of-life assessment. Epilepsia. 2000;41(11):1474–84.

    Article  CAS  PubMed  Google Scholar 

  16. Elliott IM, Lach L, Smith ML. 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. 2005;7(4):664–78.

    Article  PubMed  Google Scholar 

  17. McEwan MJ, Espie CA, Metcalfe J, Brodie MJ, Wilson MT. Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods. Seizure. 2004;13(1):15–31.

    Article  CAS  PubMed  Google Scholar 

  18. Moffat C, Dorris L, Connor L, Espie CA. The impact of childhood epilepsy on quality of life: a qualitative investigation using focus group methods to obtain children’s perspectives on living with epilepsy. Epilepsy Behav. 2009;14(1):179–89.

    Article  PubMed  Google Scholar 

  19. Baker GA, Hargis E, Hsih MM, Mounfield H, Arzimanoglou A, Glauser T, et al. Perceived impact of epilepsy in teenagers and young adults: an international survey. Epilepsy Behav. 2008;12(3):395–401.

    Article  PubMed  Google Scholar 

  20. Speechley KN, Ferro MA, Camfield CS, Huang W, Levin SD, Smith ML, et al. Quality of life in children with new-onset epilepsy: a 2-year prospective cohort study. Neurology. 2012;79(15):1548–55.

    Article  PubMed Central  PubMed  Google Scholar 

  21. Ferro MA, Camfield CS, Levin SD, Smith ML, Wiebe S, Zou G, et al. Trajectories of health-related quality of life in children with epilepsy: a cohort study. Epilepsia. 2013;54(11):1889–97.

    Article  PubMed  Google Scholar 

  22. Baca CB, Vickrey BG, Caplan R, Vassar SD, Berg AT. Psychiatric and medical comorbidity and quality of life outcomes in childhood-onset epilepsy. Pediatrics. 2011;128(6):e1532–43.

    Article  PubMed Central  PubMed  Google Scholar 

  23. Baca CB, Vickrey BG, Vassar SD, Berg AT. Seizure recency and quality of life in adolescents with childhood-onset epilepsy. Epilepsy Behav. 2012;23(1):47–51.

    Article  PubMed Central  PubMed  Google Scholar 

  24. Spencer SS, Berg AT, Vickrey BG, Sperling MR, Bazil CW, Haut S, et al. Health-related quality of life over time since resective epilepsy surgery. Ann Neurol. 2007;62(4):327–34.

    Article  PubMed  Google Scholar 

  25. Raty LK, Larsson BMW. Quality of life in young adults with uncomplicated epilepsy. Epilepsy Behav. 2007;10(1):142–7.

    Article  PubMed  Google Scholar 

  26. Stevanovic D. Health-related quality of life in adolescents with well-controlled epilepsy. Epilepsy Behav. 2007;10(4):571–5.

    Article  PubMed  Google Scholar 

  27. Sillanpaa M, Haataja L, Shinnar S. Perceived impact of childhood-onset epilepsy on quality of life as an adult. Epilepsia. 2004;45(8):971–7.

    Article  PubMed  Google Scholar 

  28. Mikati MA, Ataya N, Ferzli J, Kurdi R, El-Banna D, Rahi A, et al. Quality of life after surgery for intractable partial epilepsy in children: a cohort study with controls. Epilepsy Res. 2010;90(3):207–13.

    Article  PubMed  Google Scholar 

  29. Carpay HA, Arts WF, Vermeulen J, Stroink H, Brouwer OF, Peters AC, et al. Parent-completed scales for measuring seizure severity and severity of side-effects of antiepileptic drugs in childhood epilepsy: development and psychometric analysis. Epilepsy Res. 1996;24(3):173–81.

    Article  CAS  PubMed  Google Scholar 

  30. Gilliam F, Wyllie E, Kashden J, Faught E, Kotagal P, Bebin M, et al. Epilepsy surgery outcome: comprehensive assessment in children. Neurology. 1997;48(5):1368–74.

    Article  CAS  PubMed  Google Scholar 

  31. Gagliardi IC, Guimaraes CA, Souza EA, Schmutzler KM, Guerreiro MM. Quality of life and epilepsy surgery in childhood and adolescence. Arq Neuropsiquiatr. 2011;69(1):23–6.

    Article  PubMed  Google Scholar 

  32. Roth J, Olasunkanmi A, MacAllister WS, Weil E, Uy CC, Devinsky O, et al. Quality of life following epilepsy surgery for children with tuberous sclerosis complex. Epilepsy Behav. 2011;20(3):561–5.

    Article  PubMed  Google Scholar 

  33. Keene DL, Higgins MJ, Ventureyra EC. Outcome and life prospects after surgical management of medically intractable epilepsy in patients under 18 years of age. Childs Nerv Syst. 1997;13(10):530–5.

    Article  CAS  PubMed  Google Scholar 

  34. Vickrey BG, Perrine KR, Hays RD, Hermann BP, Cramer JA, Meador KJ, et al. Quality of life in epilepsy: QOLIE-31 (version 1) scoring manual. Santa Monica: RAND; 1993.

    Google Scholar 

  35. Elliott I, Kadis DS, Lach L, Olds J, McCleary L, Whiting S, et al. Quality of life in young adults who underwent resective surgery for epilepsy in childhood. Epilepsia. 2012;53(9):1577–86.

    Article  PubMed  Google Scholar 

  36. O’Donoghue MF, Goodridge DM, Redhead K, Sander JW, Duncan JS. Assessing the psychosocial consequences of epilepsy: a community-based study. Br J Gen Pract. 1999;49(440):211–4.

    PubMed Central  PubMed  Google Scholar 

  37. Puka K, Smith ML. Predictors of long-term quality of life after pediatric epilepsy surgery. Epilepsia. 2015.

    Google Scholar 

  38. Lach LM, Elliott I, Giecko T, Olds J, Snyder T, McCleary L, et al. Patient-reported outcome of pediatric epilepsy surgery: social inclusion or exclusion as young adults? Epilepsia. 2010;51(10):2089–97.

    Article  PubMed  Google Scholar 

  39. Lach LM, Ronen GM, Rosenbaum PL, Cunningham C, Boyle MH, Bowman S, et al. Health-related quality of life in youth with epilepsy: theoretical model for clinicians and researchers. Part I: the role of epilepsy and co-morbidity. Qual Life Res. 2006;15(7):1161–71.

    Article  PubMed  Google Scholar 

  40. Smith ML, Kelly K, Kadis DS, Elliott IM, Olds J, Whiting S, et al. Self-reported symptoms of psychological well-being in young adults who underwent resective epilepsy surgery in childhood. Epilepsia. 2011;52(5):891–9.

    Article  PubMed  Google Scholar 

  41. Hamid H, Blackmon K, Cong X, Dziura J, Atlas LY, Vickrey BG, et al. Mood, anxiety, and incomplete seizure control affect quality of life after epilepsy surgery. Neurology. 2014;82(10):887–94.

    Article  PubMed Central  PubMed  Google Scholar 

  42. 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(5):544–50.

    Article  PubMed  Google Scholar 

  43. Park SP, Song HS, Hwang YH, Lee HW, Suh CK, Kwon SH. Differential effects of seizure control and affective symptoms on quality of life in people with epilepsy. Epilepsy Behav. 2010;18(4):455–9.

    Article  PubMed  Google Scholar 

  44. Tracy JI, Dechant V, Sperling MR, Cho R, Glosser D. The association of mood with quality of life ratings in epilepsy. Neurology. 2007;68(14):1101–7.

    Article  CAS  PubMed  Google Scholar 

  45. McNair D, Lorr M, Droppleman L. POMS: profile of mood states. San Diego: EdiTS/Educational and Industrial Testing Service; 1992.

    Google Scholar 

  46. Achenbach TM, Rescorla LA. Manual for the ASEBA adult forms & profiles. Burlington: University of Vermont, Research Center for Children, Youth & Families; 2003.

    Google Scholar 

  47. Achenbach TM, Rescorla LA. Manual for the ASEBA school-age forms & profiles. Burlington: University of Vermont, Research Center for Children, Youth & Families; 2001.

    Google Scholar 

  48. Wakamoto H, Nagao H, Hayashi M, Morimoto T. Long-term medical, educational, and social prognoses of childhood-onset epilepsy: a population-based study in a rural district of Japan. Brain Dev. 2000;22(4):246–55.

    Article  CAS  PubMed  Google Scholar 

  49. Jalava M, Sillanpaa M, Camfield C, Camfield P. Social adjustment and competence 35 years after onset of childhood epilepsy: a prospective controlled study. Epilepsia. 1997;38(6):708–15.

    Article  CAS  PubMed  Google Scholar 

  50. Jonsson P, Jonsson B, Eeg-Olofsson O. Psychological and social outcome of epilepsy in well-functioning children and adolescents. A 10-year follow-up study. Eur J Paediatr Neurol. 2014;18(3):381–90.

    Article  PubMed  Google Scholar 

  51. Schneider-von Podewils F, Gasse C, Geithner J, Wang ZI, Bombach P, Berneiser J, et al. Clinical predictors of the long-term social outcome and quality of life in juvenile myoclonic epilepsy: 20–65 years of follow-up. Epilepsia. 2014;55(2):322–30.

    Article  PubMed  Google Scholar 

  52. Hum KM, Smith ML, Lach L, Elliott IM. Self-perceptions of social function 2 years after pediatric epilepsy surgery. Epilepsy Behav. 2010;17(3):354–9.

    Article  PubMed  Google Scholar 

  53. Park CK, Kim SK, Wang KC, Hwang YS, Kim KJ, Chae JH, et al. Surgical outcome and prognostic factors of pediatric epilepsy caused by cortical dysplasia. Childs Nerv Syst. 2006;22(6):586–92.

    Article  PubMed  Google Scholar 

  54. Keene DL, Loy-English I, Ventureyra EC. Long-term socioeconomic outcome following surgical intervention in the treatment of refractory epilepsy in childhood and adolescence. Childs Nerv Syst. 1998;14(8):362–5.

    Article  CAS  PubMed  Google Scholar 

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Correspondence to Mary Lou Smith PhD .

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Appendix. Summary of Long-Term (≥2 years) Studies of Quality of Life and Psychosocial Outcomes in Children After Epilepsy Surgery

Appendix. Summary of Long-Term (≥2 years) Studies of Quality of Life and Psychosocial Outcomes in Children After Epilepsy Surgery

Author, year

Study design

Participants† (children) N

Surgical N

Males

Age (yr) at surgery (min-max)

% life (yr) with epilepsy

Prognostic indicators studied

Intervention

Seizure outcome measure

Seizure-free N

Follow-up (min-max/years)

Keene et al. [33]

CS

64 (20)

64

39

12.2 (4.8)**

NS

a,b

T-EXT

B

35

7.6 (3.8)** 2 - NS

Keene et al. [54]

CS

64 (20)

64

39

12.2 (4.8)**

NS

a

T-EXT

E

35

7.6 (3.8)** 2 - NS

Lach et al. [38]

CS

102 (0)

71

41

13.5 (3.71)**

0.5–18.4

67(23)**

a,c,e,g,l

T-EXT

A

38‡

8.8 (4.9)**

2–22

Elliot et al.[35]

CS

98 (0)

69

37

13.5 (3.71)**

0.5–18.4

66(24)**

a,c,d,f,h,i,j,m

T-EXT

A

38‡

8.8 (4.9)**

2–22

Puka and Smith [37]

CS

109 (34)

71

68

13.2 (4.3)**

4.25–18.83

58(28)**

a,d,j,k,n

T-EXT

A

Surgical: 40

Controls: 16

6.9 (2.2)**

4–11

  1. CS cross-sectional, NS not specified, T temporal, EXT extratemporal, A seizure free > 1 year, B seizure free > 2 years, E Engel classification, a seizure status, b type of surgical procedure (temporal resection, extratemporal resection, or hemispherectomy), c age of seizure onset, d years since surgery/follow-up, e proportion of life with epilepsy, f duration of epilepsy, g age at surgery, h current age, i sex, j AED use, k IQ, l emotional well-being, m mood state, n affective symptoms, yr years, † All patients were children at baseline or time of surgery-number in parentheses refers to those aged 18 years or less at time of follow-up, ‡ Inclusion criteria for nonsurgical group was active epilepsy, ** Mean (SD)

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Smith, M.L., Puka, K. (2015). Quality of Life and Psychosocial Outcomes in Children Following Epilepsy Surgery. In: Malmgren, K., Baxendale, S., Cross, J. (eds) Long-Term Outcomes of Epilepsy Surgery in Adults and Children. Springer, Cham. https://doi.org/10.1007/978-3-319-17783-0_13

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  • DOI: https://doi.org/10.1007/978-3-319-17783-0_13

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