Patient, parent and carer perspectives surrounding expedited paediatric epilepsy surgery

Omar Salim; Aswin Chari; Ido Ben Zvi; Rachel Batchelor; Monika Jones; Torsten Baldeweg; J Helen Cross; Martin Tisdall

doi:10.1016/j.eplepsyres.2024.107309

Patient, parent and carer perspectives surrounding expedited paediatric epilepsy surgery

Epilepsy Res. 2024 Feb:200:107309. doi: 10.1016/j.eplepsyres.2024.107309. Epub 2024 Jan 24.

Authors

Omar Salim¹, Aswin Chari², Ido Ben Zvi³, Rachel Batchelor⁴, Monika Jones⁵, Torsten Baldeweg⁶, J Helen Cross⁷, Martin Tisdall⁸

Affiliations

¹ School of Medicine, Dentistry and Nursing, University of Glasgow, Glasgow, UK.
² Department of Neurosurgery, Great Ormond Street Hospital, London, UK; Developmental Neurosciences, Great Ormond Street Institute of Child Health, University College London, London, UK. Electronic address: aswin.chari.18@ucl.ac.uk.
³ Department of Neurosurgery, Great Ormond Street Hospital, London, UK.
⁴ Department of Psychology, Royal Holloway, University of London, London, UK.
⁵ Pediatric Epilepsy Surgery Alliance (formerly The Brain Recovery Project), Los Angeles, CA, USA.
⁶ Developmental Neurosciences, Great Ormond Street Institute of Child Health, University College London, London, UK.
⁷ Developmental Neurosciences, Great Ormond Street Institute of Child Health, University College London, London, UK; Department of Neurology, Great Ormond Street Hospital, London, UK.
⁸ Department of Neurosurgery, Great Ormond Street Hospital, London, UK; Developmental Neurosciences, Great Ormond Street Institute of Child Health, University College London, London, UK.

PMID: 38286106
DOI: 10.1016/j.eplepsyres.2024.107309

Abstract

Objective: Most paediatric epilepsies with MRI visible lesions do not respond to antiseizure pharmacotherapy. Such medication resistance, which often takes years to become formally defined, is commonly required for surgical candidacy. Expedited surgical referral at lesional epilepsy diagnosis may result in better seizure, cognitive and developmental prognoses. This study explored the views of patients, parents and carers regarding epilepsy surgery, treatment priorities, and participation in a proposed expedited surgery trial.

Methods: 205 patients, parents and carers (61% UK-based, 26% North American) responded to electronic surveys from February to May 2022. Participants were recruited through social media sites, epilepsy charities and societies. Categorical choice and free-text questions were used to investigate participant perspectives, and Pearson's chi-squared test was utilised to detect meaningful differences amongst respondent subgroups.

Results: Almost 90% of respondents who had experienced epilepsy surgery (either themselves or their child) reported seizure cessation or reduction. Postoperative outcome measures prioritised most frequently were seizure freedom (66%), quality of life (47%), seizure severity (30%), seizure frequency (28%) and independence (27%). Most participants support expedited surgery in suitable patients (65%), with just over half (51%) willing to participate in the proposed trial. Many participants (37%) were undecided, often due to fears surrounding neurosurgery. Subgroup perspectives were broadly similar, with more parents and caregivers favouring expedited surgery compared to patients (p = .016) and more UK-based participants willing to take part in an expedited surgery trial compared to those from North America (p = .01).

Conclusions: Patients, parents and carers are open to considering expedited surgery for lesional epilepsies and would support a trial exploring this approach. Priorities from treatment were largely similar between participant subgroups, with seizure, quality of life and neuropsychological outcomes ranked highly. Accounting for these preferences will facilitate the delivery of a trial that is patient- and caregiver-focused, enhancing feasibility, satisfaction and benefit for prospective participants.

Keywords: Carers; Epilepsy surgery; Paediatric; Parents; Priorities; Treatment resistance.

MeSH terms

Caregivers*
Child
Epilepsy* / diagnosis
Humans
Prospective Studies
Quality of Life
Seizures