
Integrated Care in Epilepsy Management: A Scoping Review of the Models and Components of Health and Social Care Delivery
References
- World Health Organisation. Epilepsy. Geneva; 2019.
https://www.who.int/news-room/fact-sheets/detail/epilepsy . - Mitchell RJ, Herkes G, Nikpour A, et al. Examining health service utilization, hospital treatment cost, and mortality of individuals with epilepsy and status epilepticus in New South Wales, Australia 2012–2016. Epilepsy Behav. 2018; 79: 9–16. DOI: 10.1016/j.yebeh.2017.11.022
- Keezer MR, Sisodiya SM, Sander JW. Comorbidities of epilepsy: current concepts and future perspectives. Lancet Neurol. 2016; 15(1): 106–15. DOI: 10.1016/S1474-4422(15)00225-2
- Welton JM, Walker C, Riney K, et al. Quality of life and its association with comorbidities and adverse events from antiepileptic medications: Online survey of patients with epilepsy in Australia. Epilepsy Behav. 2020; 104: 106856. DOI: 10.1016/j.yebeh.2019.106856
- Higgins A, Downes C, Varley J, et al. Patients with epilepsy care experiences: comparison between services with and without an epilepsy specialist nurse. Epilepsy Behav. 2018; 85: 85–94. DOI: 10.1016/j.yebeh.2018.05.038
- Hutchinson K, Herkes G, Shih P, et al. Identification and referral of patients with refractory epilepsy from the primary to the tertiary care interface in New South Wales, Australia. Epilepsy Behav. 2020; 111. DOI: 10.1016/j.yebeh.2020.107232
- Varley J, Delanty N, Normand C, et al. The health care journeys experienced by people with epilepsy in Ireland: what are the implications for future service reform and development? Epilepsy Behav. 2011; 20(2): 299–307. DOI: 10.1016/j.yebeh.2010.10.020
- National Institute for Clinical Excellence. Epilepsies in children, young people and adults (NG217): National Institute for Clinical Excellence; 2022. Available from:
https://www.nice.org.uk/guidance/ng217/resources/epilepsies-in-children-young-people-and-adults-pdf-66143780239813 . - Hinnell C, Williams J, Metcalfe A, et al. Health status and health-related behaviors in epilepsy compared to other chronic conditions—A national population-based study. Epilepsia. 2010; 51(5): 853–61. DOI: 10.1111/j.1528-1167.2009.02477.x
- van der Poest Clement E, Jansen FE, Braun KP, et al. Update on drug management of refractory epilepsy in tuberous sclerosis complex. Pediatr Drugs. 2020; 22: 73–84. DOI: 10.1007/s40272-019-00376-0
- Goodwin N, Stein V, Amelung V.
What is integrated care? In: Handbook integrated care. Springer; 2021. p. 3–25. DOI: 10.1007/978-3-030-69262-9_1 - Bodenheimer T, Sinsky C. From triple to quadruple aim: care of the patient requires care of the provider. Ann Fam Med. 2014; 12(6): 573–6. DOI: 10.1370/afm.1713
- Marino M, de Belvis AG, Tanzariello M, et al. Effectiveness and cost-effectiveness of integrated care models for elderly, complex patients: A narrative review. Don’t we need a value-based approach? Int J Care Coord. 2018; 21(4): 120–39. DOI: 10.1177/2053434518817019
- Hutchinson K, Ryder T, Proctor C, et al.
Integrated care in epilepsy: a rapid review of key components of health and social care delivery . Working Paper. Australian Institute of Health Innovation and NHRMC Partnership Centre for Health System Sustainability, Macquarie University, Sydney, and Central Coast Research Institute, University of Newcastle and Central Coast Local Health District, Gosford, Australia; 2020. DOI: 10.6084/m9.figshare.13294001.v1 - Tricco AC, Lillie E, Zarin W, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018; 169(7): 467–73. DOI: 10.7326/M18-0850
- Bellon M, Pfeiffer W, Maurici V. Choice and control: how involved are people with epilepsy and their families in the management of their epilepsy? Results from an Australian survey in the disability sector. Epilepsy Behav. 2014; 37: 227–32. DOI: 10.1016/j.yebeh.2014.07.011
- Buelow J, Miller W, Fishman J. Development of an epilepsy nursing communication tool: improving the quality of interactions between nurses and patients with seizures. J Neurosci Nurs. 2018; 50(2): 74. DOI: 10.1097/jnn.0000000000000353
- Cross JH, Wait S, Arzimanoglou A, et al. Are we failing to provide adequate rescue medication to children at risk of prolonged convulsive seizures in schools? Arch Dis Child. 2013; 98(10): 777–80. DOI: 10.1136/archdischild-2013-304089
- Hafeez B, Miller S, Patel AD, et al. Care coordination at a pediatric accountable care organization (ACO): a qualitative analysis. Epilepsy Behav. 2017; 73: 148–55. DOI: 10.1016/j.yebeh.2017.05.020
- Le Pichon J-B, Horton S, Abdelmoity O, et al. The use of virtual tools in narrowing the impact of health disparities in neurology. Front Pediatr. 2022: 1784. DOI: 10.3389/fped.2022.1028833
- Lindhardt CL, Maerkedahl M, Brandt CE, et al. The personalised discharge letter: the experience of patients and parents from the Filadelfia Epilepsy Hospital. Scand J Caring Sci. 2021; 35(1): 67–74. DOI: 10.1111/scs.12846
- Tetuan C, Axon DR, Bingham J, et al. Assessing the effect of a telepharmacist’s recommendations during an integrated, interprofessional telehealth appointment and their alignment with quality measures. J Manag Care Spec Pharm. 2019; 25(12): 1334–9. DOI: 10.18553/jmcp.2019.25.12.1334
- Tschamper MK, Jakobsen R. Parents’ experiences of videoconference as a tool for multidisciplinary information exchange for children with epilepsy and disability. J Clin Nurs. 2019; 28(9–10): 1506–16. DOI: 10.1111/jocn.14755
- Scavasine VC, Ribas MZ, Augustin G, et al. Store-and-forward teleneurology results in a large Brazilian city. Arq Neuropsiquiatr. 2022; 80(08): 802–5. DOI: 10.1055/s-0042-1755204
- Berg AT, Baca CB, Loddenkemper T, et al. Priorities in pediatric epilepsy research: improving children’s futures today. Neurol. 2013; 81(13): 1166–75. DOI: 10.1212/WNL.0b013e3182a55fb9
- Granata T. Comprehensive care of children with Dravet syndrome. Epilepsia. 2011; 52: 90–4. DOI: 10.1111/j.1528-1167.2011.03011.x
- Kirkpatrick L, Harrison E, Borrero S, et al. Preferences and experiences of women with epilepsy regarding sexual and reproductive healthcare provision. Epilepsy Behav. 2022; 129: 108631. DOI: 10.1016/j.yebeh.2022.108631
- Kluger BM, Drees C, Wodushek TR, et al. Would people living with epilepsy benefit from palliative care? Epilepsy Behav. 2021; 114: 107618. DOI: 10.1016/j.yebeh.2020.107618
- Minshall I, Buckels L, Cox P, et al. UK general practice: Continuing to fail in the care of people with epilepsy? Epilepsy Behav. 2021; 124: 108354. DOI: 10.1016/j.yebeh.2021.108354
- Ogundele MO, Morton M. Classification, prevalence and integrated care for neurodevelopmental and child mental health disorders: A brief overview for paediatricians. World J Clin Pediatr. 2022; 11(2): 120. DOI: 10.5409/wjcp.v11.i2.120
- Samanta D, Singh R, Gedela S, et al. Underutilization of epilepsy surgery: Part II: Strategies to overcome barriers. Epilepsy Behav. 2021; 117: 107853. DOI: 10.1016/j.yebeh.2021.107853
- Saxena A, Paredes-Echeverri S, Michaelis R, et al. Using the biopsychosocial model to guide patient-centered neurological treatments. Semin Neurol. 2022; 42(2): 080–7. DOI: 10.1055/s-0041-1742145
- Tumiene B, Riera MD, Grikiniene J, et al. Multidisciplinary Care of Patients with Inherited Metabolic Diseases and Epilepsy: Current Perspectives. J Multidiscip Healthc. 2022; 15: 553–66. DOI: 10.2147/JMDH.S251863
- Varley J, Delanty N, Normand C, et al. Epilepsy in Ireland: Towards the primary–tertiary care continuum. Seizure. 2010; 19(1): 47–52. DOI: 10.1016/j.seizure.2009.11.002
- Auvin S, Bissler JJ, Cottin V, et al. A step-wise approach for establishing a multidisciplinary team for the management of tuberous sclerosis complex: a Delphi consensus report. Orphanet J Rare Dis. 2019; 14(1): 1–10. DOI: 10.1186/s13023-019-1072-y
- Annear NM, Appleton RE, Bassi Z, et al. Tuberous sclerosis complex (TSC): Expert recommendations for provision of coordinated care. Front Neurol. 2019; 10: 1116. DOI: 10.3389/fneur.2019.01116
- Bali A, Hargreaves DS, Cowman J, et al. Integrated care for childhood epilepsy: ongoing challenges and lessons for other long-term conditions. Arch Dis Child. 2016; 101(11): 1057–62. DOI: 10.1136/archdischild-2015-309794
- Fitzsimons M, Normand C, Varley J, et al. Evidence-based models of care for people with epilepsy. Epilepsy Behav. 2012; 23(1): 1–6. DOI: 10.1016/j.yebeh.2011.10.019
- Jackson MC, Vasquez A, Ojo O, et al. Identifying Barriers to Care in the Pediatric Acute Seizure Care Pathway. Int J Integr Care. 2022; 22(1): 28, 1–19. DOI: 10.5334/ijic.5598
- Lewis SA, Noyes J. Effective process or dangerous precipice: qualitative comparative embedded case study with young people with epilepsy and their parents during transition from children’s to adult services. BMC Pediatr. 2013; 13(1): 1–24. DOI: 10.1186/1471-2431-13-169
- Doran E, Barron E, Healy L, et al. Improving access to epilepsy care for homeless patients in the Dublin Inner City: a collaborative quality improvement project joining hospital and community care. BMJ Open Qual. 2021; 10(2):
e001367 . DOI: 10.1136/bmjoq-2021-001367 - Higgins A, Downes C, Varley J, et al. Supporting and empowering people with epilepsy: contribution of the Epilepsy Specialist Nurses (SENsE study). Seizure. 2019; 71: 42–9. DOI: 10.1016/j.seizure.2019.06.008
- Patel AD, Wood EG, Cohen DM. Reduced emergency department utilization by patients with epilepsy using QI methodology. Pediatr. 2017; 139(2). DOI: 10.1542/peds.2015-2358
- Pugh JD, McCoy K, Needham M, et al. Evaluation of an Australian neurological nurse-led model of postdischarge care. Health Soc Care Community. 2022; 30(4): e962–e73. DOI: 10.1111/hsc.13498
- Satherley RM, Lingam R, Green J, et al. Integrated health Services for Children: a qualitative study of family perspectives. BMC Health Serv Res. 2021; 21(1): 167. DOI: 10.1186/s12913-021-06141-9
- Williams J, Doherty J, Di Blasi C, et al. Seizure care in the emergency department. Identifying and bridging the gaps. A study of care and outcomes from 644 seizure presentations. Epilepsy Behav. 2018; 78: 226–31. DOI: 10.1016/j.yebeh.2017.08.042
- Williams J, Petrov G, Kennedy U, et al. Moving evidence based guidelines for seizures into practice in the emergency department: What’s stopping us? Epilepsy Behav. 2017; 72: 72–7. DOI: 10.1016/j.yebeh.2017.04.022
- Byrne J-P, Power R, Kiersey R, et al. The rhetoric and reality of integrated patient-centered care for healthcare providers: an ethnographic exploration of epilepsy care in Ireland. Epilepsy Behav. 2019; 94: 87–92. DOI: 10.1016/j.yebeh.2019.02.011
- Power R, Byrne J-P, Kiersey R, et al. Are patients ready for integrated person-centered care? A qualitative study of people with epilepsy in Ireland. Epilepsy Behav. 2020; 102: 106668. DOI: 10.1016/j.yebeh.2019.106668
- Varley J, Kiersey R, Power R, et al. Igniting intersectoral collaboration in chronic disease management: a participatory action research study on epilepsy care in Ireland. J Interprof Care. 2020; 34(4): 500–8. DOI: 10.1080/13561820.2019.1697655
- Kaehne A. The building blocks of integrated care. Int J Integr Care. 2016; 16(4). DOI: 10.5334/ijic.2527
- Hutchinson K, Ryder T, Coleman H, et al. Determining the role and responsibilities of the community epilepsy nurse in the management of epilepsy. J Clin Nurs. 2023; 32(13–14): 3730–45. DOI: 10.1111/jocn.16582
- Adler-Milstein J. From Digitization to Digital Transformation: Policy Priorities for Closing the Gap. Health Policy. 2021; 325(8): 717–8. DOI: 10.1001/jama.2020.27014
- Ham C, Murray R.
The NHS 10-year plan: how should the extra funding be spent? The King’s Fund; 2018 [Available from:https://www.kingsfund.org.uk/publications/nhs-10-year-plan . - Godin K, Stapleton J, Kirkpatrick SI, et al. Applying systematic review search methods to the grey literature: a case study examining guidelines for school-based breakfast programs in Canada. Syst Rev. 2015; 4(1): 1–10. DOI: 10.1186/s13643-015-0125-0
DOI: https://doi.org/10.5334/ijic.7659 | Journal eISSN: 1568-4156
Language: English
Submitted on: May 4, 2023
Accepted on: Feb 13, 2024
Published on: Mar 8, 2024
Published by: Ubiquity Press
In partnership with: Paradigm Publishing Services
Publication frequency: 4 issues per year
Keywords:
© 2024 Samantha Spanos, Karen Hutchinson, Tayhla Ryder, Frances Rapport, Nicholas Goodwin, Yvonne Zurynski, published by Ubiquity Press
This work is licensed under the Creative Commons Attribution 4.0 License.