Karen Hutchinson1, Geoffrey Herkes2, Patti Shih3, Emilie Francis-Auton4, Mia Bierbaum5, Tayhla Ryder6, Armin Nikpour7, Andrew Bleasel8, Chong Wong9, Sanjyot Vagholkar10, Jeffrey Braithwaite11, Frances Rapport12. 1. Australian Institute of Health Innovation, Level 6, 75 Talavera Road, Macquarie University, NSW 2109, Australia. Electronic address: karen.hutchinson@mq.edu.au. 2. University of Sydney, City Road, Camperdown, NSW 2006, Australia; Royal North Shore Hospital, Reserve Rd, St Leonards, NSW 2065, Australia. Electronic address: geoffrey.herkes@health.nsw.gov.au. 3. Australian Institute of Health Innovation, Level 6, 75 Talavera Road, Macquarie University, NSW 2109, Australia. Electronic address: patti.shih@uow.edu.au. 4. Australian Institute of Health Innovation, Level 6, 75 Talavera Road, Macquarie University, NSW 2109, Australia. Electronic address: emilie.francis-auton@mq.edu.au. 5. Australian Institute of Health Innovation, Level 6, 75 Talavera Road, Macquarie University, NSW 2109, Australia. Electronic address: mia.bierbaum@mq.edu.au. 6. Australian Institute of Health Innovation, Level 6, 75 Talavera Road, Macquarie University, NSW 2109, Australia. Electronic address: tayhla.ryder@mq.edu.au. 7. University of Sydney, City Road, Camperdown, NSW 2006, Australia; Royal Prince Alfred Hospital, 50 Missenden Rd, Camperdown, NSW 2050, Australia. Electronic address: armin@sydneyneurology.com.au. 8. University of Sydney, City Road, Camperdown, NSW 2006, Australia; Westmead Hospital, Corner Darcy and Hawkesbury Rd, Westmead, NSW 2145, Australia. Electronic address: andrew.bleasel@sydney.edu.au. 9. University of Sydney, City Road, Camperdown, NSW 2006, Australia; Westmead Hospital, Corner Darcy and Hawkesbury Rd, Westmead, NSW 2145, Australia. Electronic address: chong.wong@health.nsw.gov.au. 10. MQ Health General Practice, Macquarie University, NSW 2109, Australia. Electronic address: sanjyot.vagholkar@mq.edu.au. 11. Australian Institute of Health Innovation, Level 6, 75 Talavera Road, Macquarie University, NSW 2109, Australia. Electronic address: jeffrey.braithwaite@mq.edu.au. 12. Australian Institute of Health Innovation, Level 6, 75 Talavera Road, Macquarie University, NSW 2109, Australia. Electronic address: frances.rapport@mq.edu.au.
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. 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.
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.
Keywords:
Disease identification and referral pathways and practices; Knowledge and understanding in primary and community care; Refractory epilepsy; Shared care
Authors: Jean-Baptiste Gartner; Kassim Said Abasse; Frédéric Bergeron; Paolo Landa; Célia Lemaire; André Côté Journal: BMC Health Serv Res Date: 2022-04-26 Impact factor: 2.908