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

Epilepsy and Behavior - Tập 111 - Trang 107232 - 2020
Karen Hutchinson1, Geoffrey Herkes2,3, Patti Shih1, Emilie Francis-Auton1, Mia Bierbaum1, Tayhla Ryder1, Armin Nikpour2,4, Andrew Bleasel2,5, Chong Wong2,5, Sanjyot Vagholkar6, Jeffrey Braithwaite1, Frances Rapport1
1Australian Institute of Health Innovation, Level 6, 75 Talavera Road, Macquarie University, NSW 2109, Australia
2University of Sydney, City Road, Camperdown, NSW 2006, Australia
3Royal North Shore Hospital, Reserve Rd, St Leonards, NSW 2065, Australia
4Royal Prince Alfred Hospital, 50 Missenden Rd, Camperdown, NSW 2050, Australia
5Westmead Hospital, Corner Darcy and Hawkesbury Rd, Westmead, NSW 2145, Australia
6MQ Health General Practice, Macquarie University, NSW 2109, Australia

Tài liệu tham khảo

World Health Organisation, 2019, 1 Deloitte Access Economics, The economic burden of epilepsy in Australia, 2019–2020. Epilepsy Australia: Sydney. p. 1–53. Fiest, 2017, Prevalence and incidence of epilepsy: a systematic review and meta-analysis of international studies, Neurology, 88, 296, 10.1212/WNL.0000000000003509 Epilepsy Action Australia Mitchell, 2018, Examining health service utilization, hospital treatment cost, and mortality of individuals with epilepsy and status epilepticus in New South Wales, Australia 2012–2016, Epilepsy and Behaviour, 79, 9, 10.1016/j.yebeh.2017.11.022 Jacoby, 2008, Quality-of-life trajectories in epilepsy: a review of the literature, Epilepsy Behav, 12, 557, 10.1016/j.yebeh.2007.11.013 Hill, 2018, Addressing barriers to surgical evaluation for patients with epilepsy, Epilepsy Behav, 86, 1, 10.1016/j.yebeh.2018.07.003 Kwan, 2010, Definition of drug resistant epilepsy: consensus proposal by the ad hoc task force of the ILAE commission on therapeutic strategies, Epilepsia, 51, 1069, 10.1111/j.1528-1167.2009.02397.x Jetté, 2016, Surgical treatment for epilepsy: the potential gap between evidence and practice, Lancet Neurol, 15, 982, 10.1016/S1474-4422(16)30127-2 Sherman, 2011, Neuropsychological outcomes after epilepsy surgery: systematic review and pooled estimates, Epilepsia, 52, 857, 10.1111/j.1528-1167.2011.03022.x Jobst, 2015, Resective epilepsy surgery for drug-resistant focal epilepsy: a review, JAMA, 313, 285, 10.1001/jama.2014.17426 Anderson, 2013, Epilepsy surgery: factors that affect decision making in choosing or deferring a procedure, Epilepsy Res Treat, 1 Dewar, 2015, Perceptions of epilepsy surgery: a systematic review and an explanatory model of decision-making, Epilepsy Behav, 44, 171, 10.1016/j.yebeh.2014.12.027 Shih, 2020, Enhancing quality of life among epilepsy surgery patients: interlinking multiple social and relational determinants, Epilepsy Behav, 102, 106721, 10.1016/j.yebeh.2019.106721 Schmidt, 2009, Long-term seizure outcome of surgery versus no surgery for drug-resistant partial epilepsy: a review of controlled studies, Epilepsia, 50, 1301, 10.1111/j.1528-1167.2008.01997.x Englot, 2014, Rates and predictors of seizure freedom in resective epilepsy surgery: an update, Neurosurg Rev, 37, 389, 10.1007/s10143-014-0527-9 Roberts, 2015, Neurologists' knowledge of and attitudes toward epilepsy surgery: a national survey, Neurology, 84, 159, 10.1212/WNL.0000000000001127 Mumford, 2019, Promoting faster pathways to surgery: a clinical audit of patients with refractory epilepsy, BMC Neurol, 19, 29, 10.1186/s12883-019-1255-0 Erba, 2012, Barriers toward epilepsy surgery. A survey among practicing neurologists, Epilepsia, 53, 35, 10.1111/j.1528-1167.2011.03282.x Berg, 2003, How long does it take for partial epilepsy to become intractable?, Neurology, 60, 186, 10.1212/01.WNL.0000031792.89992.EC Sauro, 2016, The current state of epilepsy guidelines: a systematic review, Epilepsia, 57, 13, 10.1111/epi.13273 Rapport, 2019, Determinants of health and wellbeing in refractory epilepsy and surgery: the patient reported, ImpleMentation sciEnce (PRIME) model, Epilepsy Behav, 92, 79, 10.1016/j.yebeh.2018.11.027 Delaney, 2018, Patient-centred care as an approach to improving health care in Australia, Collegian, 25, 119, 10.1016/j.colegn.2017.02.005 Byrne, 2019, The rhetoric and reality of integrated patient-centered care for healthcare providers: an ethnographic exploration of epilepsy care in Ireland, Epilepsy Behav, 94, 87, 10.1016/j.yebeh.2019.02.011 Pickrell, 2015, Shared decision-making in epilepsy management, Epilepsy Behav, 47, 78, 10.1016/j.yebeh.2015.01.033 Rapport, 2015, Qualitative research and its methods in epilepsy: contributing to an understanding of patients' lived experiences of the disease, Epilepsy Behav, 45, 94, 10.1016/j.yebeh.2015.01.040 Varley, 2010, Epilepsy in Ireland: towards the primary–tertiary care continuum, Seizure, 19, 47, 10.1016/j.seizure.2009.11.002 Rapport, 2017, Better evidence for earlier assessment and surgical intervention for refractory epilepsy (the BEST study); a mixed methods study protocol, BMJ Open, 7, 1, 10.1136/bmjopen-2017-017148 Shih, 2018, Leading up to saying "yes": a qualitative study on the experience of patients with refractory epilepsy regarding presurgical investigation for resective surgery, Epilepsy Behav, 83, 36, 10.1016/j.yebeh.2018.03.028 Hogden, 2019, Appraising risk in active surveillance of localized prostate cancer, Health Expect, 22, 1028, 10.1111/hex.12912 Tongco, 2007, Purposive sampling as a tool for informant selection, Ethnobot Res Appl, 5, 147, 10.17348/era.5.0.147-158 Pit, 2014, The effectiveness of recruitment strategies on general practitioner's survey response rates: a systematic review, BMC Med Res Methodol, 14, 1 Rapport, 2018 Cresswell, 2011 Rapport, 2018, Schema analysis: sense-making in qualitative research Qualtrics, Qualtrics. 2019: Provo, Utah, USA. Braun, 2012, Thematic analysis, 57 Ritchie, 1994, Qualitative data analysis for applied policy research, 173 Gale, 2013, Using the framework method for the analysis of qualitative data in multi-disciplinary health research, BMC Med Res Methodol, 13, 117, 10.1186/1471-2288-13-117 Denzin, 2012, Triangulation 2.0, J Mixed Methods Res, 6, 80, 10.1177/1558689812437186 Kwan, 2000, Early identification of refractory epilepsy, N Engl J Med, 342, 314, 10.1056/NEJM200002033420503 Armstrong, 2006, The role of etiquette and experimentation in explaining how doctors change behaviour: a qualitative study, Sociol Health Illn, 28, 951 Sauro, 2015, Developing clinical practice guidelines for epilepsy: a report from the ILAE Epilepsy Guidelines Working Group, Epilepsia, 1 Shih, 2020, Resilient healthcare in refractory epilepsy treatment: illuminating successful people-centred care, 1 Epilepsy Review Committee Neurosciences & the Senses Health Network, 2008 Australian Commission on Safety and Quality in Health Care, 2011, 1 Braithwaite, 2018, When complexity science meets implementation science: a theoretical and empirical analysis of systems change, BMC Medicine, 16, 10.1186/s12916-018-1057-z Liberati, 2016, Invisible walls within multidisciplinary teams: disciplinary boundaries and their effects on integrated care, Soc Sci Med, 150, 31, 10.1016/j.socscimed.2015.12.002 Fong Ha, 2010, Doctor–patient communication review, Ochsner J, 10, 38 Dimopoulos-Bick, 2019, Shared decision making implementation: a case study analysis to increase uptake in New South Wales, Aust Health Rev, 43, 492, 10.1071/AH18138 Elliott, 2008, Patient, caregiver, and health care practitioner knowledge of, beliefs about, and attitudes toward epilepsy, Epilepsy Behav, 12, 547, 10.1016/j.yebeh.2007.11.008 Thapar, 2005, General practitioner attitudes to the care of people with epilepsy: an examination of clustering within practices and prediction of patient-rated quality of care, BMC Fam Pract, 6, 9, 10.1186/1471-2296-6-9 Joseph-Williams, 2014, Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making, Patient Educ Couns, 94, 291, 10.1016/j.pec.2013.10.031 Erba, 2012, Acceptance of epilepsy surgery among adults with epilepsy — what do patients think?, Epilepsy Behav, 24, 352, 10.1016/j.yebeh.2012.04.126 Minshall, 2014, Have the new GP contract and NICE guidelines improved the clinical care of people with epilepsy?, Seizure, 23, 874, 10.1016/j.seizure.2014.07.015 Sauro, 2019, Improving knowledge translation of clinical practice guidelines for epilepsy, Epilepsy Behav, 265, 10.1016/j.yebeh.2019.01.016 Sharobeam, 2019, Management and attitudes toward patients with epilepsy in general practice: how far have we come in three decades?, Epilepsy Behav, 97, 92, 10.1016/j.yebeh.2019.05.020 Fisher, 2017, Operational classification of seizure types by the International League Against Epilepsy: position paper of the ILAE Commission for Classification and Terminology, Epilepsia, 58, 522, 10.1111/epi.13670 Powell, 2012, The struggle to improve patient care in the face of professional boundaries, Soc Sci Med, 75, 807, 10.1016/j.socscimed.2012.03.049 Peterson, 2017, Older people and knowledge of epilepsy: GPs can help, Aust Fam Physician, 46, 132