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Journal of Pediatric Neurology 2020; 18(06): 286-291
DOI: 10.1055/s-0040-1715503
Review Article

Lost in Transition: The Long and Winding Road Toward Epilepsy Surgery—An Analysis of Obstacles Prior to Surgery and Call for Orchestrated Health Care Efforts in Epilepsy

Burkhard S. Kasper   *
1   Department of Neurology, Epilepsy Center, Friedrich-Alexander University Erlangen-Nuremberg, Erlangen, Germany
,
Wolfgang Graf‡   *
1   Department of Neurology, Epilepsy Center, Friedrich-Alexander University Erlangen-Nuremberg, Erlangen, Germany
,
Sunjay Sharma
2   Division of Neurosurgery, McMaster University, Hamilton, Canada
,
Ekkehard M. Kasper
2   Division of Neurosurgery, McMaster University, Hamilton, Canada
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Abstract

Difficult-to-treat epilepsy is defined as ongoing seizures despite adequate pharmacological treatment. This condition is affecting a significant percentage of epilepsy patients and is estimated to be as high as one-third of all patients. Epilepsy surgery, targeting the removal of the key parts of cerebral convolutions responsible for seizure generation and often including a structural lesion, can be a very successful approach. However, this necessitates careful patient selection by comprehensive investigations, proving the localization of the epileptogenic zone as well as measures to make such surgeries safe. With careful selection as a prerequisite, the percentage of patients achieving seizure freedom by neurosurgical intervention is high, approximating two-thirds of all epilepsy surgeries performed. In contrast, the average duration of a patient's pharmacoresistant focal epilepsy prior to surgery anywhere around the globe is around 20 years. Given that typical patients are ∼30 to 40 years of age at the time of surgery, many patients have been living with chronic seizures since childhood or adolescence. This means that most of these patients have been going through several stages of medical care for years or even decades, both as children and adults, without ever being fully investigated and/or selected for surgery which is concerning. Yet, there is no set standard for a timeline leading toward successful surgery in epilepsy. It is obvious that the average transit period from the moment of first seizure manifestation until the day of successful surgery takes much too long. This is the reason why we see these patients lost in transition.

Keywords

epilepsy - management - epilepsy surgery - transition

* These authors contributed equally.




Publication History

Received: 31 March 2019

Accepted: 04 January 2020

Article published online:
20 August 2020

© 2020. Thieme. All rights reserved.

Georg Thieme Verlag KG
Stuttgart · New York

 

  • References

  • 1 Kwan P, Schachter SC, Brodie MJ. Drug-resistant epilepsy. N Engl J Med 2011; 365 (10) 919-926
    CrossrefPubMedGoogle Scholar
  • 2 Engel Jr J. The current place of epilepsy surgery. Curr Opin Neurol 2018; 31 (02) 192-197
    CrossrefPubMedGoogle Scholar
  • 3 Roessler K, Hofmann A, Sommer B. et al. Resective surgery for medically refractory epilepsy using intraoperative MRI and functional neuronavigation: the Erlangen experience of 415 patients. Neurosurg Focus 2016; 40 (03) E15
    CrossrefPubMedGoogle Scholar
  • 4 Englot DJ, Chang EF. Rates and predictors of seizure freedom in resective epilepsy surgery: an update. Neurosurg Rev 2014; 37 (03) 389-404 , discussion 404–405
    CrossrefPubMedGoogle Scholar
  • 5 Blümcke I, Spreafico R, Haaker G. et al; EEBB Consortium. Histopathological findings in brain tissue obtained during epilepsy surgery. N Engl J Med 2017; 377 (17) 1648-1656
    CrossrefPubMedGoogle Scholar
  • 6 Bien CG, Raabe AL, Schramm J, Becker A, Urbach H, Elger CE. Trends in presurgical evaluation and surgical treatment of epilepsy at one centre from 1988-2009. J Neurol Neurosurg Psychiatry 2013; 84 (01) 54-61
    CrossrefPubMedGoogle Scholar
  • 7 Choi H, Sell RL, Lenert L. et al. Epilepsy surgery for pharmacoresistant temporal lobe epilepsy: a decision analysis. JAMA 2008; 300 (21) 2497-2505
    CrossrefPubMedGoogle Scholar
  • 8 Berg AT, Vickrey BG, Testa FM. et al. How long does it take for epilepsy to become intractable? A prospective investigation. Ann Neurol 2006; 60 (01) 73-79
    CrossrefPubMedGoogle Scholar
  • 9 Engel Jr J. Surgical treatment for epilepsy: too little, too late?. JAMA 2008; 300 (21) 2548-2550
    CrossrefPubMedGoogle Scholar
  • 10 Engel Jr J. Why is there still doubt to cut it out?. Epilepsy Curr 2013; 13 (05) 198-204
    CrossrefPubMedGoogle Scholar
  • 11 Englot DJ. The persistent under-utilization of epilepsy surgery. Epilepsy Res 2015; 118: 68-69
    CrossrefPubMedGoogle Scholar
  • 12 Kasper BS, Kasper EM, Pauli E, Stefan H. Phenomenology of hallucinations, illusions, and delusions as part of seizure semiology. Epilepsy Behav 2010; 18 (1-2): 13-23
    CrossrefPubMedGoogle Scholar
  • 13 Lang JD, Taylor DC, Kasper BS. Stress, seizures, and epilepsy: patient narratives. Epilepsy Behav 2018; 80: 163-172
    CrossrefPubMedGoogle Scholar
  • 14 Kunze A, Reuber M. The first seizure as an indicator of epilepsy. Curr Opin Neurol 2018; 31 (02) 156-161
    CrossrefPubMedGoogle Scholar
  • 15 Beghi E, Giussani G, Sander JW. The natural history and prognosis of epilepsy. Epileptic Disord 2015; 17 (03) 243-253
    CrossrefPubMedGoogle Scholar
  • 16 Fisher RS, Cross JH, French JA. et al. Operational classification of seizure types by the International League Against Epilepsy: position paper of the ILAE Commission for Classification and Terminology. Epilepsia 2017; 58 (04) 522-530
    CrossrefPubMedGoogle Scholar
  • 17 Scheffer IE, Berkovic S, Capovilla G. et al. ILAE classification of the epilepsies: position paper of the ILAE Commission for Classification and Terminology. Epilepsia 2017; 58 (04) 512-521
    CrossrefPubMedGoogle Scholar
  • 18 Lüders H, Akamatsu N, Amina S. et al. Critique of the 2017 epileptic seizure and epilepsy classifications. Epilepsia 2019; 60 (06) 1032-1039
    CrossrefPubMedGoogle Scholar
  • 19 Jung KY, Kim JM, Kim DW, Chung CS. Independent component analysis of generalized spike-and-wave discharges: primary versus secondary bilateral synchrony. Clin Neurophysiol 2005; 116 (04) 913-919
    CrossrefPubMedGoogle Scholar
  • 20 Shorvon SD. The etiologic classification of epilepsy. Epilepsia 2011; 52 (06) 1052-1057
    CrossrefPubMedGoogle Scholar
  • 21 Von Oertzen J, Urbach H, Jungbluth S. et al. Standard magnetic resonance imaging is inadequate for patients with refractory focal epilepsy. J Neurol Neurosurg Psychiatry 2002; 73 (06) 643-647
    CrossrefPubMedGoogle Scholar
  • 22 Kenney DL, Kelly-Williams KM, Krecke KN. et al. Usefulness of repeat review of head magnetic resonance images during presurgical epilepsy conferences. Epilepsy Res 2016; 126: 106-108
    CrossrefPubMedGoogle Scholar
  • 23 Kasper BS, Kasper EM. New classification of epilepsy-related neoplasms: the clinical perspective. Epilepsy Behav 2017; 67: 91-97
    CrossrefPubMedGoogle Scholar
  • 24 Sillanpää M, Schmidt D. Long-term outcome of medically treated epilepsy. Seizure 2017; 44: 211-216
    CrossrefPubMedGoogle Scholar
  • 25 Jetté N, Sander JW, Keezer MR. Surgical treatment for epilepsy: the potential gap between evidence and practice. Lancet Neurol 2016; 15 (09) 982-994
    CrossrefPubMedGoogle Scholar
  • 26 de Flon P, Kumlien E, Reuterwall C, Mattsson P. Empirical evidence of underutilization of referrals for epilepsy surgery evaluation. Eur J Neurol 2010; 17 (04) 619-625
    CrossrefPubMedGoogle Scholar
  • 27 Kumlien E, Mattsson P. Attitudes towards epilepsy surgery: a nationwide survey among Swedish neurologists. Seizure 2010; 19 (04) 253-255
    CrossrefPubMedGoogle Scholar
  • 28 Steinbrenner M, Kowski AB, Holtkamp M. Referral to evaluation for epilepsy surgery: reluctance by epileptologists and patients. Epilepsia 2019; 60 (02) 211-219
    CrossrefPubMedGoogle Scholar
  • 29 Feldman L, Kotagal P. Patient management conference: correlating pre-surgical data. Seizure 2020; 77: 40-42
    CrossrefPubMedGoogle Scholar
  • 30 Reed CM, Dewar S, Fried I, Engel Jr J, Eliashiv D. Failed epilepsy surgery deserves a second chance. Clin Neurol Neurosurg 2017; 163: 110-115
    CrossrefPubMedGoogle Scholar
  • 31 Camfield PR, Andrade D, Camfield CS. et al. How can transition to adult care be best orchestrated for adolescents with epilepsy?. Epilepsy Behav 2019; 93: 138-147
    CrossrefPubMedGoogle Scholar
  • 32 Le Marne FA, Towns SJ, Gaskin C. et al. Implementing a new adolescent epilepsy service: improving patient experience and readiness for transition. J Paediatr Child Health 2019; 55 (07) 819-825
    CrossrefPubMedGoogle Scholar
  • 33 Blümcke I, Arzimanoglou A, Beniczky S, Wiebe S. Roadmap for a competency-based educational curriculum in epileptology: report of the Epilepsy Education Task Force of the International League Against Epilepsy. Epileptic Disord 2019; 21 (02) 129-140
    PubMedGoogle Scholar
  • 34 Rutka J. Neurosurgery expert panel report. Available at: www.ontla.on.ca/library/repository/mon/20000/279563.pdf . Accessed December 11, 2019
    PubMedGoogle Scholar
  • 35 Zelano J, Klecki J, Christensen J, Tomson T, Malmgren K. ESBACE consortium Collaborators. The provision of epilepsy care across Europe 2017: a 17-year follow-up survey. Epilepsia Open 2019; 4 (01) 144-152
    CrossrefPubMedGoogle Scholar
  • 36 Thuy Le MA, Fong SL, Lim KS. et al. Underutilization of epilepsy surgery in ASEAN countries. Seizure 2019; 69: 51-56
    CrossrefPubMedGoogle Scholar
  • 37 Schiltz NK, Kaiboriboon K, Koroukian SM, Singer ME, Love TE. Long-term reduction of health care costs and utilization after epilepsy surgery. Epilepsia 2016; 57 (02) 316-324
    CrossrefPubMedGoogle Scholar
  • 38 Feigin VL, Nichols E, Alam T. et al. GBD 2016 Neurology Collaborators. Global, regional, and national burden of neurological disorders, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol 2019; 18 (05) 459-480
    CrossrefPubMedGoogle Scholar
  • 39 Witt JA, Elger CE, Helmstaedter C. Adverse cognitive effects of antiepileptic pharmacotherapy: each additional drug matters. Eur Neuropsychopharmacol 2015; 25 (11) 1954-1959
    CrossrefPubMedGoogle Scholar
  • 40 Englot DJ. Failed epilepsy surgery: it is not too late. Epilepsy Res 2015; 113: 151-152
    CrossrefPubMedGoogle Scholar