Leading up to saying "yes"

a qualitative study on the experience of patients with refractory epilepsy regarding presurgical investigation for resective surgery

Patti Shih, Armin Nikpour, Andrew Bleasel, Geoffrey K. Herkes, Rebecca Mitchell, Rebecca Seah, Virginia Mumford, Jeffrey Braithwaite, Sanjyot Vagholkar, Frances Rapport

Research output: Contribution to journalArticle

8 Citations (Scopus)
33 Downloads (Pure)


Objectives: Adult patients with refractory epilepsy who are potential candidates for resective surgery undergo a period of presurgical investigation in tertiary epilepsy centers (TECs), where they engage extensively with healthcare professionals and receive a range of treatment-related information. This qualitative study aimed to examine the experiences of adult patients with refractory epilepsy leading up to and during presurgical investigation and how their perceptions of resective surgery are shaped. Methods: In-depth interviews with 12 patients and six epilepsy specialist clinicians and 12 observations of routine patient–clinician consultations took place at two TECs in Sydney, Australia. Data were thematically analyzed via group work. Results: Patients reflected on prior experiences of poor seizure control and inadequate antiepileptic drug management and a lack of clarity about their condition before referral to tertiary care. Poor continuity of care and disrupted care transitions affected patients from regional locations. Tertiary referral increased engagement with personalized information about refractory epilepsy, which intensified during presurgical assessments with additional hospital visits and consultations. Experiential information, such as testimonials of other patients, influenced perceptions of surgery and fostered more trust and confidence towards healthcare professionals. Conclusion: Qualitative inquiry detailed multifaceted effects of information on patients' overall treatment trajectory and experience of healthcare. Earlier patient identification for surgical assessments should be accompanied by access to good quality information at primary and community care levels and strengthened referral processes.
Original languageEnglish
Pages (from-to)36-43
Number of pages8
JournalEpilepsy and Behavior
Early online dateJun 2018
Publication statusPublished - Jun 2018

Bibliographical note

Copyright the Author(s) 2018. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.


  • refractory epilepsy
  • resective surgery
  • patient experiences
  • healthcare engagement
  • referral processes
  • qualitative research

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