Advertisement

Parents’ opinions about epilepsy surgery in children with epilepsy

  • Hamid Nemati
    Affiliations
    Epilepsy Research Center, Shiraz University of Medical Sciences, Shiraz, Iran
    Search for articles by this author
  • Ali A. Asadi-Pooya
    Correspondence
    Corresponding author at: Epilepsy Research Center, Shiraz University of Medical Sciences, Shiraz, Iran.
    Affiliations
    Epilepsy Research Center, Shiraz University of Medical Sciences, Shiraz, Iran

    Jefferson Comprehensive Epilepsy Center, Department of Neurology, Thomas Jefferson University, Philadelphia, USA
    Search for articles by this author
Published:October 31, 2022DOI:https://doi.org/10.1016/j.yebeh.2022.108949

      Highlights

      • Two hundred and seventy-seven participants (58.7%) were willing to have epilepsy surgery for their children.
      • The most common reason was to be able to discontinue the drugs.
      • Parental factors (e.g., educational level) had significant associations with their willingness to have surgery.
      • Patient factors (e.g., drug regimen) had significant associations with their parental willingness to have surgery.

      Abstract

      Objective

      This survey aimed to investigate the opinions of the parents of children with epilepsy with regard to the application of epilepsy surgery for their children.

      Methods

      We surveyed all the parents of children with epilepsy referred to our neurology clinic (Shiraz University of Medical Sciences) in April-July 2022. We collected their opinions about epilepsy surgery based on a predesigned questionnaire. The inclusion criteria included parents of all children with epilepsy (1 to 16 years of age, with at least one-year history of epilepsy, and with at least one drug used in the past 12 months).

      Results

      In total, 472 people participated in the study; 277 participants (58.7%) were willing to have epilepsy surgery for their child; the most common reason was to be able to discontinue the drugs. Sex (male), age (younger), and education (college) of the parents had significant associations with the parental willingness to have surgery for their children. The patient’s drug regimen (polytherapy) and history of ictal injury (in the child) also had significant associations with the parental willingness to have surgery for the children.

      Conclusion

      Most parents of children with epilepsy are willing to have epilepsy surgery for their children if their physician presents epilepsy surgery to them as an established, safe, and effective treatment option. Patient and parental-related factors should be considered when designing educational materials and programs for preoperative counseling for the parents of children with drug-resistant seizures.

      Keywords

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Epilepsy & Behavior
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Camfield P.
        • Camfield C.
        Incidence, prevalence and aetiology of seizures and epilepsy in children.
        Epileptic Disord. 2015; 17: 117-123
        • Kwan P.
        • Arzimanoglou A.
        • Berg A.T.
        • Brodie M.J.
        • Allen Hauser W.
        • Mathern G.
        • et al.
        Definition of drug resistant epilepsy: consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies.
        Epilepsia. 2010; 51: 1069-1077
        • Asadi-Pooya A.A.
        • Sperling M.R.
        Clinical features of sudden unexpected death in epilepsy.
        J Clin Neurophysiol. 2009; 26: 297-301
        • Asadi-Pooya A.A.
        • Nikseresht A.
        • Yaghoubi E.
        • Nei M.
        Physical injuries in patients with epilepsy and their associated risk factors.
        Seizure. 2012; 21: 165-168
        • Scott A.J.
        • Sharpe L.
        • Loomes M.
        • Gandy M.
        Systematic review and meta-analysis of anxiety and depression in youth with epilepsy.
        J Pediatr Psychol. 2020; 45: 133-144
        • Hermann B.
        • Seidenberg M.
        • Bell B.
        • Rutecki P.
        • Sheth R.
        • Ruggles K.
        • et al.
        The neurodevelopmental impact of childhood-onset temporal lobe epilepsy on brain structure and function.
        Epilepsia. 2002; 43: 1062-1071
        • Roulet-Perez E.
        • Davidoff V.
        • Mayor-Dubois C.
        • Maeder-Ingvar M.
        • Seeck M.
        • Ruffieux C.
        • et al.
        Impact of severe epilepsy on development: recovery potential after successful early epilepsy surgery.
        Epilepsia. 2010; 51: 1266-1276
        • Sperling M.R.
        • Barshow S.
        • Nei M.
        • Asadi-Pooya A.A.
        A reappraisal of mortality after epilepsy surgery.
        Neurology. 2016; 86: 1938-1944
        • van Empelen R.
        • Jennekens-Schinkel A.
        • van Rijen P.C.
        • Helders P.J.M.
        • van Nieuwenhuizen O.
        Health-related quality of life and self-perceived competence of children assessed before and up to two years after epilepsy surgery.
        Epilepsia. 2005; 46: 258-271
        • de Flon P.
        • Kumlien E.
        • Reuterwall C.
        • Mattsson P.
        Empirical evidence of underutilization of referrals for epilepsy surgery evaluation.
        Eur J Neurol. 2010; 17: 619-625
        • Samanta D.
        • Ostendorf A.P.
        • Willis E.
        • Singh R.
        • Gedela S.
        • Arya R.
        • et al.
        Underutilization of epilepsy surgery: Part I: A scoping review of barriers.
        Epilepsy Behav. 2021; 117
        • Mandrekar J.N.
        Receiver operating characteristic curve in diagnostic test assessment.
        J Thorac Oncol. 2010; 5: 1315-1316
        • Barba C.
        • Giometto S.
        • Lucenteforte E.
        • Pellacani S.
        • Matta G.
        • Bettiol A.
        • et al.
        Seizure outcome of temporal lobe epilepsy surgery in adults and children: a systematic review and meta-analysis.
        Neurosurgery. 2022; https://doi.org/10.1227/neu.0000000000002094
        • Li H.
        • Ji S.
        • Dong B.
        • Chen L.
        Seizure control after epilepsy surgery in early childhood: a systematic review and meta-analysis.
        Epilepsy Behav. 2021; 125
        • Mao H.
        • Chen Y.
        • Ge Q.
        • Ye L.
        • Cheng H.
        Short- and long-term response of vagus nerve stimulation therapy in drug-resistant epilepsy: a systematic review and meta-analysis.
        Neuromodulation. 2022; 25: 327-342
        • Hrincu V.
        • McDonald P.J.
        • Connolly M.B.
        • Harrison M.J.
        • Ibrahim G.M.
        • Naftel R.P.
        • et al.
        Choice and trade-offs: parent decision making for neurotechnologies for pediatric drug-resistant epilepsy.
        J Child Neurol. 2021; 36: 943-949
        • Hirschmann D.
        • Czech T.
        • Roessler K.
        • Krachsberger P.
        • Paliwal S.
        • Ciobanu-Caraus O.
        • et al.
        How can we optimize the long-term outcome in children with intracranial cavernous malformations? A single-center experience of 61 cases.
        Neurosurg Rev. 2022; 45: 3299-3313https://doi.org/10.1007/s10143-022-01823-2
        • Wagstyl K.
        • Whitaker K.
        • Raznahan A.
        • Seidlitz J.
        • Vértes P.E.
        • Foldes S.
        • et al.
        Atlas of lesion locations and postsurgical seizure freedom in focal cortical dysplasia: a MELD study.
        Epilepsia. 2022; 63: 61-74
        • Cross J.H.
        • Reilly C.
        • Gutierrez Delicado E.
        • Smith M.L.
        • Malmgren K.
        Epilepsy surgery for children and adolescents: evidence-based but underused.
        Lancet Child Adolesc Health. 2022; 6: 484-494
        • Touma L.
        • Dansereau B.
        • Chan A.Y.
        • Jetté N.
        • Kwon C.-S.
        • Braun K.P.J.
        • et al.
        Neurostimulation in people with drug-resistant epilepsy: systematic review and meta-analysis from the ILAE Surgical Therapies Commission.
        Epilepsia. 2022; 63: 1314-1329
        • Sylvén I.
        • Olsson I.
        • Hallböök T.
        • Rydenhag B.
        • Reilly C.
        'In the best case seizure-free' – Parental hopes and worries before and satisfaction after their child's epilepsy surgery.
        Epilepsy Behav. 2020; 110
        • Samanta D.
        • Hoyt M.L.
        • Perry M.S.
        Parental experience and decision-making for epilepsy surgery: a systematic review of qualitative and quantitative studies.
        Epilepsy Behav. 2021; 123
        • Yoon S.
        • Goh H.
        • Foo C.P.
        • Kao M.I.M.
        • Hie S.L.
        • Chan S.L.
        • et al.
        Parents' priorities for decision-making of pediatric epilepsy treatments and perceived needs for decision support in multi-ethnic Asian clinical setting: a qualitative analysis.
        Epilepsy Behav. 2022; 135
        • Romanowski E.F.
        • McNamara N.
        Surgery for intractable epilepsy in pediatrics, a systematic review of outcomes other than seizure freedom.
        Semin Pediatr Neurol. 2021; 39
        • Gloss D.
        • Pargeon K.
        • Pack A.
        • Varma J.
        • French J.A.
        • Tolchin B.
        • et al.
        Antiseizure medication withdrawal in seizure-free patients: practice advisory update summary: report of the AAN Guideline Subcommittee.
        Neurology. 2021; 97: 1072-1081
        • Rauschenbach L.
        • Bartsch P.
        • Santos A.N.
        • Lenkeit A.
        • Darkwah Oppong M.
        • Wrede K.H.
        • et al.
        Quality of life and mood assessment in conservatively treated cavernous malformation-related epilepsy.
        Brain Behav. 2022; 12: e2595