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Identification and referral of patients with refractory epilepsy from the primary to the tertiary care interface in New South Wales, Australia.
Identification and referral of patients with refractory epilepsy from the primary to the tertiary care interface in New South Wales, Australia.
- Source :
-
Epilepsy & behavior : E&B [Epilepsy Behav] 2020 Oct; Vol. 111, pp. 107232. Date of Electronic Publication: 2020 Jul 05. - Publication Year :
- 2020
-
Abstract
- 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.<br />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.<br />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.<br />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.<br />Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.<br /> (Copyright © 2020 The Author(s). Published by Elsevier Inc. All rights reserved.)
- Subjects :
- Adult
Aged
Drug Resistant Epilepsy psychology
Family psychology
Feasibility Studies
Female
General Practitioners psychology
General Practitioners trends
Humans
Male
Middle Aged
Neurologists psychology
Neurologists trends
New South Wales epidemiology
Primary Health Care trends
Qualitative Research
Tertiary Healthcare trends
Drug Resistant Epilepsy epidemiology
Drug Resistant Epilepsy therapy
Primary Health Care methods
Referral and Consultation trends
Surveys and Questionnaires
Tertiary Healthcare methods
Subjects
Details
- Language :
- English
- ISSN :
- 1525-5069
- Volume :
- 111
- Database :
- MEDLINE
- Journal :
- Epilepsy & behavior : E&B
- Publication Type :
- Academic Journal
- Accession number :
- 32640412
- Full Text :
- https://doi.org/10.1016/j.yebeh.2020.107232