Patti Shih1, Armin Nikpour2, Andrew Bleasel3, Geoffrey Herkes4, Rebecca Mitchell5, Rebecca Seah6, Virginia Mumford7, Jeffrey Braithwaite8, Sanjyot Vagholkar9, Frances Rapport10. 1. Australian Institute of Health Innovation, Faculty of Medicine and Health Sciences, Macquarie University, Sydney, Australia. Electronic address: patti.shih@mq.edu.au. 2. Royal Prince Alfred Hospital, Sydney, Australia; University of Sydney, Sydney, Australia. Electronic address: armin@sydneyneurology.com.au. 3. University of Sydney, Sydney, Australia; Westmead Hospital, Westmead, Australia. Electronic address: andrew.bleasel@sydney.edu.au. 4. University of Sydney, Sydney, Australia; Royal North Shore Hospital, Sydney, Australia. Electronic address: geoffrey.herkes@health.nsw.gov.au. 5. Australian Institute of Health Innovation, Faculty of Medicine and Health Sciences, Macquarie University, Sydney, Australia. Electronic address: r.mitchell@mq.edu.au. 6. Australian Institute of Health Innovation, Faculty of Medicine and Health Sciences, Macquarie University, Sydney, Australia. Electronic address: rebecca.seah@mq.edu.au. 7. Australian Institute of Health Innovation, Faculty of Medicine and Health Sciences, Macquarie University, Sydney, Australia. Electronic address: virginia.mumford@mq.edu.au. 8. Australian Institute of Health Innovation, Faculty of Medicine and Health Sciences, Macquarie University, Sydney, Australia. Electronic address: Jeffrey.braithwaite@mq.edu.au. 9. Primary Care & Wellbeing, Faculty of Medicine and Health Sciences, Macquarie University, Sydney, Australia. Electronic address: sanjyot.vagholkar@mq.edu.au. 10. Australian Institute of Health Innovation, Faculty of Medicine and Health Sciences, Macquarie University, Sydney, Australia. Electronic address: frances.rapport@mq.edu.au.
Abstract
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.
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.
Authors: Frances Rapport; Clare Clement; Anne C Seagrove; Laith Alrubaiy; Hayley A Hutchings; John G Williams Journal: BMC Gastroenterol Date: 2019-10-15 Impact factor: 3.067
Authors: Adriel Barrios-Anderson; Nicole C R McLaughlin; Morgan T Patrick; Richard Marsland; Georg Noren; Wael F Asaad; Benjamin D Greenberg; Steven Rasmussen Journal: Front Integr Neurosci Date: 2022-02-22