Patients' long-term perspectives on gains and losses after temporal lobe resection for epilepsy

Eli B Kyte; Annette Holth Skogan; Åsne Bjøråsen Baklid; Kristina Malmgren; Anneli Ozanne; Kristin Å Alfstad

doi:10.1016/j.yebeh.2023.109400

Patients' long-term perspectives on gains and losses after temporal lobe resection for epilepsy

Epilepsy Behav. 2023 Oct:147:109400. doi: 10.1016/j.yebeh.2023.109400. Epub 2023 Sep 11.

Authors

Eli B Kyte¹, Annette Holth Skogan², Åsne Bjøråsen Baklid³, Kristina Malmgren⁴, Anneli Ozanne⁵, Kristin Å Alfstad⁶

Affiliations

¹ The National Centre for Epilepsy, Member of the ERN EpiCARE, Oslo University Hospital, Postboks 4950, Nydalen, 0424 Oslo, Norway. Electronic address: elibk@ous-hf.no.
² The National Centre for Epilepsy, Member of the ERN EpiCARE, Oslo University Hospital, Postboks 4950, Nydalen, 0424 Oslo, Norway. Electronic address: annette.holth.skogan@ous-hf.no.
³ The National Centre for Epilepsy, Oslo University Hospital, Postboks 4950, Nydalen, 0424 Oslo, Norway.
⁴ Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, The Sahlgrenska Academy at the University of Gothenburg, Blå stråket 7, SE-413 45 Gothenburg, Sweden; Department of Neurology, Member of ERN EpiCare, Sahlgrenska University Hospital, Blå Stråket 7, 413 46 Gothenburg, Sweden. Electronic address: kristina.malmgren@neuro.gu.se.
⁵ Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Box 100, 405 30 Gothenburg, Sweden; Department of Neurology, Member of ERN EpiCare, Sahlgrenska University Hospital, Blå Stråket 7, 413 46 Gothenburg, Sweden. Electronic address: anneli.ozanne@gu.se.
⁶ The National Centre for Epilepsy, Member of the ERN EpiCARE, Oslo University Hospital, Postboks 4950, Nydalen, 0424 Oslo, Norway. Electronic address: kristina@ous-hf.no.

PMID: 37703614
DOI: 10.1016/j.yebeh.2023.109400

Abstract

Objective: To investigate long-term (>10 years) experiences and overall satisfaction with temporal lobe resections (TLB) for epilepsy.

Methods: Eligible participants were identified through the administrative epilepsy surgery registry at Oslo University Hospital. Data were collected through individual, semi-structured interviews with fifty participants. Interview records were analyzed using reflexive thematic analysis.

Results: Participants' answers were divided into two main themes: "looking back on surgery" and"considering gains and losses from surgery". Most participants expressed satisfaction with having undergone surgery. Nevertheless, postsurgical problems had been encountered, and presurgical hopes had only partly been fulfilled. They described memory and naming problems with a major impact on daily life. Further, they had thoughts about effects on employment, independence, and feelings of loneliness, and expressed a need for more and better preoperative information.

Conclusions: Presurgical hopes go beyond seizure freedom and memory and naming problems are experienced lasting many years after surgery in the temporal lobe. Better preoperative information, particularly about unwanted cognitive effects, is of prime importance. By exploring patientś presurgical hopes, a common ground for expectations on surgery may be found along with strategies on how to cope with cognitive difficulties and possible negative life changes.

Keywords: Cognition; Epilepsy surgery; Long-term outcome; Patient experience; Qualitative method; Temporal lobe resection.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Epilepsy* / surgery
Epilepsy, Temporal Lobe* / surgery
Humans
Neurosurgical Procedures
Temporal Lobe / surgery
Treatment Outcome