Identification and referral of patients with refractory epilepsy from the primary to the tertiary care interface in New South Wales, Australia

Karen Hutchinson*, Geoffrey Herkes, Patti Shih, Emilie Francis-Auton, Mia Bierbaum, Tayhla Ryder, Armin Nikpour, Andrew Bleasel, Chong Wong, Sanjyot Vagholkar, Jeffrey Braithwaite, Frances Rapport

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

5 Citations (Scopus)
64 Downloads (Pure)


Objectives: This mixed-method feasibility study conducted in New South Wales (NSW), Australia, aimed to explore clinical practices around the identification of patients with refractory epilepsy and referral from primary care to Tertiary Epilepsy Centers. The perceptions of general practitioners, neurologists, and adults living with refractory epilepsy were considered.

Methods: Fifty-two data collection events were achieved through 22 semi-structured interviews with six neurologists and 12 adults who currently have, or have had refractory epilepsy, and four family members, 10 clinical observations of patient consultations and 20 surveys with general practitioners. A thematic analysis was conducted on the qualitative data alongside assessment of observational fieldnotes and survey data.

Findings: Two main themes emerged: 1) Patient healthcare pathways and care experiences highlighted the complex and deeply contextualized experiences of both patients and healthcare professionals, from first identification of people's seizures, in primary and community care settings, to referral to Tertiary Epilepsy Centers, shedding light on a fragmented, nonstandardized referral process, influenced by both individual and shared-care practices. 2) Factors impacting referrals and patient pathways indicated that onward referral to a Tertiary Epilepsy Center is affected by the knowledge, or the lack thereof, of healthcare professionals regarding treatment options. Barriers include limited person-centered care, shared decision-making, and refractory epilepsy education for healthcare professionals, which can delay patients' disease identification and can hinder speedy referral pathways and processes, in Australia for up to 17 years. In addition, person-centered communication around care pathways is affected by relationships between clinicians, patients, and family members.

Conclusion: This study has identified a noticeable lack of standardized care across epilepsy-related healthcare sectors, which recognizes a need for developing and implementing clearer epilepsy-related guidelines and Continuing Professional Development in the primary and community care settings. This, however, requires greater collaboration and commitment in the primary, community, and tertiary care sectors to address the ongoing misconceptions around professional roles and responsibilities to optimize shared-care practices. Ultimately, prioritizing person-centered care on both patients' and professionals' agendas, in order to improve satisfaction with care experiences of people living with complex epilepsy.
Original languageEnglish
Article number107232
Pages (from-to)1-18
Number of pages18
JournalEpilepsy and Behavior
Early online date5 Jul 2020
Publication statusPublished - Oct 2020

Bibliographical note

Copyright the Author(s) 2020. 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
  • Shared care
  • Disease identification and referral pathways and practices
  • Knowledge and understanding in primary and community care


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