Patients' Aims for Epilepsy Surgery: Desires Beyond Seizure Freedom

Abstract

Summary:Purpose: To evaluate prospectively patient's aims for epilepsy surgery as previously outlined theoretically by Taylor et al. (Epilepsia 1997;3:625-30).Methods: Ninety-three consecutive patients were interviewed by a psychiatrist as part of their evaluation for epilepsy surgery. Open-ended questions about the patient were asked, and carers' aims or ambitions for change as a result of putative relief of seizures were elicited. The interviewer aimed to obtain a maximum of five aims for later follow-up purposes. These questions were part of an extensive psychiatric interview that is described.Results: The aims of 69 patients or carers were analyzed. The 204 statements of aims were grouped into 59 categories initially. The five most frequently cited constituted 50% of all the aims listed. These aims were desire for work, driving of motor vehicles, independence, socializing, and freedom from drugs. The patients rarely identified a desire for improvement in cognitive functioning as an aim for epilepsy surgery. A final analysis into six categories showed that changes in social process predominated, even over changes in personal behavior. Conclusions:The social and personal aims to accompany relief of epilepsy identified by patients are consistent with the literature on psychosocial adjustment to epilepsy.

Insights gleaned by measuring patients' stated goals for DBS

“…These findings mirror similar data from studies examining epilepsy surgery patients' goals for surgery, highlighting that patients' expectations extend beyond seizure control and include cognitive, psychiatric, work, social, and driving goals. 20 On average, our patients described limitations to their current ability to participate in valued activities with respect to both their symptom and behavioral goals prior to DBS. Following DBS surgery, improvements were apparent over time in patients' symptom and behavioral goals, with the exception of less perceived benefits in rigidity following DBS relative to other symptom goals.…”

Employability in people with epilepsy: A systematic review

“…Of the 11 qualitative studies identified, three explored the attitudes of the employers toward epilepsy (Bishop, 2004;Cooper, 1995;John and McLellan, 1988), seven on employment experiences of PWE (Aydemir et al, 2009;Bellon et al, 2013;Bishop, 2002;Buelow, 2001;Chung et al, 2012;Jacoby et al, 2005;McQueen and Swartz, 1995) and one on the desire to have improvement in work status as motivation for epilepsy surgery (Taylor et al, 2001).…”

Langzeit-Outcome nach epilepsiechirurgischen Eingriffen

“…Ein wesentlicher Beweggrund für einen epilepsiechirurgischen Eingriff stellt oft der Wunsch der Patienten dar, ohne die Einnahme einer dauerhaften medikamentösen antikonvulsiven Anfallsprophylaxe leben zu können [42]. Die Beseitigung der Epilepsieursache in Form der Resektion des epileptogenen "Fokus" legt konzeptuell nahe, dass im Falle einer korrekten Identifikation des epileptogenen Areals und seiner vollständigen Entfernung Anfallsfreiheit auch ohne weitere medikamentöse Therapie erreichbar sein sollte.…”