How are they doing as adults? Psychosocial and socioeconomic outcomes 11‐30 years after pediatric epilepsy surgery

Abstract Objective Pediatric epilepsy surgery yields cure from epilepsy or complete seizure control with continued medication in many patients early in life. This study aimed to evaluate the long‐term (>10 years) psychosocial and socioeconomic outcomes of pediatric epilepsy surgery and examine th...

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Main Authors: Christian Hoppe, Kassandra Beeres, Juri‐Alexander Witt, Robert Sassen, Christoph Helmstaedter
Format: Article
Language:English
Published: Wiley 2023-09-01
Series:Epilepsia Open
Subjects:
Online Access:https://doi.org/10.1002/epi4.12736
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author Christian Hoppe
Kassandra Beeres
Juri‐Alexander Witt
Robert Sassen
Christoph Helmstaedter
author_facet Christian Hoppe
Kassandra Beeres
Juri‐Alexander Witt
Robert Sassen
Christoph Helmstaedter
author_sort Christian Hoppe
collection DOAJ
description Abstract Objective Pediatric epilepsy surgery yields cure from epilepsy or complete seizure control with continued medication in many patients early in life. This study aimed to evaluate the long‐term (>10 years) psychosocial and socioeconomic outcomes of pediatric epilepsy surgery and examine the role of comorbid disability, type of surgery, seizure freedom, and age at surgery. Methods A novel ad hoc parent/patient questionnaire was used to assess educational and occupational attainment, marital/familial status, mobility, and other outcomes in patients who underwent unilobar or multilobar surgery for drug‐refractory epilepsy during their childhood. The questionnaire also captured information on comorbid disability. Results Of the 353 eligible patients, 203 could still be contacted and 101 of these (50%) returned appropriately filled‐in questionnaires (follow‐up intervals: 11‐30 [mean: 19.6] years). The cure from epilepsy rate was 53%. Type of surgery was strongly confounded by comorbid disability. Patients with comorbid disabilities had significantly lower rates of regular school degrees, gainful employment, marriage, and driving license (N = 29; 12%, 4%, 0%, 3%) compared with non‐disabled patients (N = 69; 89%, 80%, 43%, and 67%, respectively). Patients achieved lower school degrees than their siblings and parents. Non‐disabled seizure‐free patients had better employment and mobility outcomes compared with non‐seizure‐free patients. Age at surgery (<10 vs. ≥10 years of age) did not have any effect on any outcome in patients with preschool seizure onset. Significance Pediatric epilepsy surgery can lead to permanent relief from epilepsy in many patients, but comorbid disability strongly impacts adult life achievement. In non‐disabled patients, favorable outcomes in academic, occupational, marital, and mobility domains were achieved, approaching respective rates in the German population. Complete seizure freedom had additional positive effects on employment and mobility in this group. However, in case of chronic comorbid disability the overall life prospects may be limited despite favorable seizure outcomes.
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spelling doaj.art-e0194406411642e28150cd257230106f2023-09-01T09:39:50ZengWileyEpilepsia Open2470-92392023-09-018379781010.1002/epi4.12736How are they doing as adults? Psychosocial and socioeconomic outcomes 11‐30 years after pediatric epilepsy surgeryChristian Hoppe0Kassandra Beeres1Juri‐Alexander Witt2Robert Sassen3Christoph Helmstaedter4Department of Epileptology University Hospital Bonn Bonn GermanyDepartment of Epileptology University Hospital Bonn Bonn GermanyDepartment of Epileptology University Hospital Bonn Bonn GermanyDepartment of Epileptology University Hospital Bonn Bonn GermanyDepartment of Epileptology University Hospital Bonn Bonn GermanyAbstract Objective Pediatric epilepsy surgery yields cure from epilepsy or complete seizure control with continued medication in many patients early in life. This study aimed to evaluate the long‐term (>10 years) psychosocial and socioeconomic outcomes of pediatric epilepsy surgery and examine the role of comorbid disability, type of surgery, seizure freedom, and age at surgery. Methods A novel ad hoc parent/patient questionnaire was used to assess educational and occupational attainment, marital/familial status, mobility, and other outcomes in patients who underwent unilobar or multilobar surgery for drug‐refractory epilepsy during their childhood. The questionnaire also captured information on comorbid disability. Results Of the 353 eligible patients, 203 could still be contacted and 101 of these (50%) returned appropriately filled‐in questionnaires (follow‐up intervals: 11‐30 [mean: 19.6] years). The cure from epilepsy rate was 53%. Type of surgery was strongly confounded by comorbid disability. Patients with comorbid disabilities had significantly lower rates of regular school degrees, gainful employment, marriage, and driving license (N = 29; 12%, 4%, 0%, 3%) compared with non‐disabled patients (N = 69; 89%, 80%, 43%, and 67%, respectively). Patients achieved lower school degrees than their siblings and parents. Non‐disabled seizure‐free patients had better employment and mobility outcomes compared with non‐seizure‐free patients. Age at surgery (<10 vs. ≥10 years of age) did not have any effect on any outcome in patients with preschool seizure onset. Significance Pediatric epilepsy surgery can lead to permanent relief from epilepsy in many patients, but comorbid disability strongly impacts adult life achievement. In non‐disabled patients, favorable outcomes in academic, occupational, marital, and mobility domains were achieved, approaching respective rates in the German population. Complete seizure freedom had additional positive effects on employment and mobility in this group. However, in case of chronic comorbid disability the overall life prospects may be limited despite favorable seizure outcomes.https://doi.org/10.1002/epi4.12736comorbid handicapslong‐term surgical outcomepediatric epilepsy surgerypsychosocial outcomesocioeconomic outcome
spellingShingle Christian Hoppe
Kassandra Beeres
Juri‐Alexander Witt
Robert Sassen
Christoph Helmstaedter
How are they doing as adults? Psychosocial and socioeconomic outcomes 11‐30 years after pediatric epilepsy surgery
Epilepsia Open
comorbid handicaps
long‐term surgical outcome
pediatric epilepsy surgery
psychosocial outcome
socioeconomic outcome
title How are they doing as adults? Psychosocial and socioeconomic outcomes 11‐30 years after pediatric epilepsy surgery
title_full How are they doing as adults? Psychosocial and socioeconomic outcomes 11‐30 years after pediatric epilepsy surgery
title_fullStr How are they doing as adults? Psychosocial and socioeconomic outcomes 11‐30 years after pediatric epilepsy surgery
title_full_unstemmed How are they doing as adults? Psychosocial and socioeconomic outcomes 11‐30 years after pediatric epilepsy surgery
title_short How are they doing as adults? Psychosocial and socioeconomic outcomes 11‐30 years after pediatric epilepsy surgery
title_sort how are they doing as adults psychosocial and socioeconomic outcomes 11 30 years after pediatric epilepsy surgery
topic comorbid handicaps
long‐term surgical outcome
pediatric epilepsy surgery
psychosocial outcome
socioeconomic outcome
url https://doi.org/10.1002/epi4.12736
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