Identifying the trajectory of social milestones 15‐20 years after epilepsy surgery: Realistic timelines for postsurgical expectations

Abstract Objective Patients often undertake epilepsy surgery with the expectation that it will lead to improvements in their social situation. Short‐ to medium‐term research consistently points toward improvements in social outcomes; however, no study has mapped out postsurgical social timelines, pa...

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Main Authors: Honor Coleman, Anne McIntosh, Sarah J. Wilson
Format: Article
Language:English
Published: Wiley 2019-09-01
Series:Epilepsia Open
Subjects:
Online Access:https://doi.org/10.1002/epi4.12341
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author Honor Coleman
Anne McIntosh
Sarah J. Wilson
author_facet Honor Coleman
Anne McIntosh
Sarah J. Wilson
author_sort Honor Coleman
collection DOAJ
description Abstract Objective Patients often undertake epilepsy surgery with the expectation that it will lead to improvements in their social situation. Short‐ to medium‐term research consistently points toward improvements in social outcomes; however, no study has mapped out postsurgical social timelines, particularly for longer‐term (>15 years) outcomes. Methods We recruited 39 patients who had undergone anterior temporal lobectomy (ATL) for drug‐resistant temporal lobe epilepsy (TLE) between 1994 and 2002. The cohort (24 females) had a median age of 49 years (range 38‐67), age of habitual seizure onset was 9.5 years (range 0.5‐29 years), and age at surgery was 31 years (range 20‐53). Patients were followed up for a median of 18.4 years postsurgery (IQR = 4.4). Using data obtained from semistructured interviews, we conducted a comprehensive qualitative analysis of patients' self‐reported postsurgical social trajectories. Self‐report questionnaires were used to assess mood and health‐related quality of life (HRQOL) at the time of interview. Results There was a common sequence of social milestone achievement, spanning 20 years postsurgery. Typically, patients first (re)gained their license, then attempted educational and vocational gains, followed by establishing long‐term relationships and finally a family unit. Rare, intermittent seizures postsurgery did not appear to have detrimental effects on social trajectories. Those who experienced a reduction in seizures showed increased likelihood of attaining social milestones compared to those with ongoing seizures. Significance Achieving social milestones after epilepsy surgery may take considerably longer than patients are expecting prior to surgery. The pattern of social milestone outcome resembled a process of psychosocial development. These findings have important implications for presurgical counseling and postsurgical rehabilitation.
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spelling doaj.art-b50c088b1b1f4d77831c208ca96a82212022-12-22T00:58:18ZengWileyEpilepsia Open2470-92392019-09-014336938110.1002/epi4.12341Identifying the trajectory of social milestones 15‐20 years after epilepsy surgery: Realistic timelines for postsurgical expectationsHonor Coleman0Anne McIntosh1Sarah J. Wilson2Melbourne School of Psychological Sciences The University of Melbourne Melbourne Victoria AustraliaEpilepsy Research Centre, Department of Medicine (Austin Health) The University of Melbourne Melbourne Victoria AustraliaMelbourne School of Psychological Sciences The University of Melbourne Melbourne Victoria AustraliaAbstract Objective Patients often undertake epilepsy surgery with the expectation that it will lead to improvements in their social situation. Short‐ to medium‐term research consistently points toward improvements in social outcomes; however, no study has mapped out postsurgical social timelines, particularly for longer‐term (>15 years) outcomes. Methods We recruited 39 patients who had undergone anterior temporal lobectomy (ATL) for drug‐resistant temporal lobe epilepsy (TLE) between 1994 and 2002. The cohort (24 females) had a median age of 49 years (range 38‐67), age of habitual seizure onset was 9.5 years (range 0.5‐29 years), and age at surgery was 31 years (range 20‐53). Patients were followed up for a median of 18.4 years postsurgery (IQR = 4.4). Using data obtained from semistructured interviews, we conducted a comprehensive qualitative analysis of patients' self‐reported postsurgical social trajectories. Self‐report questionnaires were used to assess mood and health‐related quality of life (HRQOL) at the time of interview. Results There was a common sequence of social milestone achievement, spanning 20 years postsurgery. Typically, patients first (re)gained their license, then attempted educational and vocational gains, followed by establishing long‐term relationships and finally a family unit. Rare, intermittent seizures postsurgery did not appear to have detrimental effects on social trajectories. Those who experienced a reduction in seizures showed increased likelihood of attaining social milestones compared to those with ongoing seizures. Significance Achieving social milestones after epilepsy surgery may take considerably longer than patients are expecting prior to surgery. The pattern of social milestone outcome resembled a process of psychosocial development. These findings have important implications for presurgical counseling and postsurgical rehabilitation.https://doi.org/10.1002/epi4.12341epilepsy surgerysocial outcomeslong‐term follow‐upqualitativepatient perspective
spellingShingle Honor Coleman
Anne McIntosh
Sarah J. Wilson
Identifying the trajectory of social milestones 15‐20 years after epilepsy surgery: Realistic timelines for postsurgical expectations
Epilepsia Open
epilepsy surgery
social outcomes
long‐term follow‐up
qualitative
patient perspective
title Identifying the trajectory of social milestones 15‐20 years after epilepsy surgery: Realistic timelines for postsurgical expectations
title_full Identifying the trajectory of social milestones 15‐20 years after epilepsy surgery: Realistic timelines for postsurgical expectations
title_fullStr Identifying the trajectory of social milestones 15‐20 years after epilepsy surgery: Realistic timelines for postsurgical expectations
title_full_unstemmed Identifying the trajectory of social milestones 15‐20 years after epilepsy surgery: Realistic timelines for postsurgical expectations
title_short Identifying the trajectory of social milestones 15‐20 years after epilepsy surgery: Realistic timelines for postsurgical expectations
title_sort identifying the trajectory of social milestones 15 20 years after epilepsy surgery realistic timelines for postsurgical expectations
topic epilepsy surgery
social outcomes
long‐term follow‐up
qualitative
patient perspective
url https://doi.org/10.1002/epi4.12341
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AT annemcintosh identifyingthetrajectoryofsocialmilestones1520yearsafterepilepsysurgeryrealistictimelinesforpostsurgicalexpectations
AT sarahjwilson identifyingthetrajectoryofsocialmilestones1520yearsafterepilepsysurgeryrealistictimelinesforpostsurgicalexpectations