Appendix 2: Reference List
02
Appendix 2: Reference List
- Aoun SM, Cafarella PA, Hogden A, Thomas G, Jiang L, Edis R. Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective. Palliat Care Soc Pract [Internet]. 2021;15:26323524211009537. Available from: http://dx.doi.org/10.1177/26323524211009537
- Barello S, Paolicelli D, Bergamaschi R, Cottone S, D’Amico A, Annibali V, et al. A nurse-led, telephone-based patient support program for improving adherence in patients with relapsing-remitting multiple sclerosis using interferon beta-1a: Lessons from a consumer-based survey on adveva® PSP. Front Psychol [Internet]. 2022;13:965229. Available from: http://dx.doi.org/10.3389/fpsyg.2022.965229
- Benner P, Tanner C. Clinical judgment: How expert nurses use intuition. Am J Nurs [Internet]. 1987;87(1):23. Available from: http://www.jstor.org/stable/3470396
- Bhidayasiri R, Boonpang K, Jitkritsadakul O, Calne SM, Henriksen T, Trump S, et al. Understanding the role of the Parkinson’s disease nurse specialist in the delivery of apomorphine therapy. Parkinsonism Relat Disord [Internet]. 2016;33:S49–55. Available from: http://dx.doi.org/10.1016/j.parkreldis.2016.11.014
- Blümcke I, Arzimanoglou A, Beniczky S, Wiebe S. Roadmap for a competency-based educational curriculum in epileptology: report of the Epilepsy Education Task Force of the International League Against Epilepsy. Epileptic Disord [Internet]. 2019;21(2):129–40. Available from: http://dx.doi.org/10.1684/epd.2019.1039
- Bradley PM, Lindsay B, Fleeman N. Care delivery and self management strategies for adults with epilepsy. Cochrane Database Syst Rev [Internet]. 2016;2(2):CD006244. Available from: http://dx.doi.org/10.1002/14651858.CD006244.pub3
- Coates E, Zarotti N, Williams I, White S, Halliday V, Beever D, et al. Patient, carer and healthcare professional perspectives on increasing calorie intake in Amyotrophic Lateral Sclerosis. Chronic Illn [Internet]. 2023;19(2):368–82. Available from: http://dx.doi.org/10.1177/17423953211069090
- Epilepsy Action. Epilepsy Specialist Nurses The Evidence (ESPENTE): a Systematic Mapping Review [Internet]. Epilepsy Action; 2019 [cited 04/APR/2024]. Available from: https://www.ilae.org/files/dmfile/The-ESPENTE-Study---Epilepsy-Specialist-Nurses.pdf
- Epilepsy Specialist Nurse Association (ESNA). The competency framework for adult epilepsy specialist nurses (adult ESN) [Internet]. ESNA; 2023 [cited 04/APR/2024]. Available from: https://esna-online.org/wp-content/uploads/2023/08/The-Competency-Framework-for-Adult-Epilepsy-Specialist-Nurses.pdf
- Forbes A, While A, Dyson L, Grocott T, Griffiths P. Impact of clinical nurse specialists in multiple sclerosis--synthesis of the evidence: MS nurse specialists. J Adv Nurs [Internet]. 2003;42(5):442–62. Available from: https://pubmed.ncbi.nlm.nih.gov/12752865/
- Giordano A, Liethmann K, Köpke S, Poettgen J, Rahn AC, Drulovic J, et al. Risk knowledge of people with relapsing-remitting multiple sclerosis - Results of an international survey. PLoS One [Internet]. 2018;13(11):e0208004. Available from: http://dx.doi.org/10.1371/journal.pone.0208004
- Gotta M, Mayer CA, Huebner J. Use of complementary and alternative medicine in patients with multiple sclerosis in Germany. Complement Ther Med [Internet]. 2018;36:113–7. Available from: http://dx.doi.org/10.1016/j.ctim.2017.12.006
- Hardiman O. Multidisciplinary care in ALS: expanding the team. Amyotroph Lateral Scler [Internet]. 2012;13(2):165. Available from: http://dx.doi.org/10.3109/17482968.2012.657006
- Hellqvist C, Berterö C. Support supplied by Parkinson’s disease specialist nurses to Parkinson’s disease patients and their spouses. Appl Nurs Res [Internet]. 2015;28(2):86–91. Available from: http://dx.doi.org/10.1016/j.apnr.2014.12.008
- Higgins A, Downes C, Varley J, Doherty CP, Begley C, Elliott N. Rising to the challenge: Epilepsy specialist nurses as leaders of service improvements and change (SENsE study). Seizure [Internet]. 2018;63:40–7. Available from: http://dx.doi.org/10.1016/j.seizure.2018.10.013
- Higgins A, Downes C, Varley J, Doherty CP, Begley C, Elliott N. Supporting and empowering people with epilepsy: Contribution of the Epilepsy Specialist Nurses (SENsE study). Seizure [Internet]. 2019;71:42–9. Available from: http://dx.doi.org/10.1016/j.seizure.2019.06.008
- Higgins A, Downes C, Varley J, P Doherty C, Begley C, Elliott N. Evidence-based practice among epilepsy specialist nurses in the Republic of Ireland: Findings from the SENsE study. J Nurs Manag [Internet]. 2019;27(4):840–7. Available from: http://dx.doi.org/10.1111/jonm.12747
- Higgins A, Downes C, Varley J, Tyrell E, Normand C, Doherty CP, et al. Patients with epilepsy care experiences: Comparison between services with and without an epilepsy specialist nurse. Epilepsy Behav [Internet]. 2018;85:85–94. Available from: http://dx.doi.org/10.1016/j.yebeh.2018.05.038
- Higgins A, Murphy R, Downes C, Varley J, Begley C, Elliott N. Factors influencing the implementation of Epilepsy Specialist Nurse role: Using the Consolidation Framework for Implementation Research. J Clin Nurs [Internet]. 2020;29(7–8):1352–64. Available from: http://dx.doi.org/10.1111/jocn.15197
- Hobson E, Baird W, Bradburn M, Cooper C, Mawson S, Quinn A, et al. Process evaluation and exploration of telehealth in motor neuron disease in a UK specialist centre. BMJ Open [Internet]. 2019;9(10):e028526. Available from: http://dx.doi.org/10.1136/bmjopen-2018-028526
- Hogden A, Foley G, Henderson RD, James N, Aoun SM. Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach. J Multidiscip Healthc [Internet]. 2017;10:205–15. Available from: http://dx.doi.org/10.2147/JMDH.S134992
- Hollowood L. 55 Palliative care for people with motor neurone disease. An integrative literature review. BMJ Support Palliat Care [Internet]. 2018;8(3):381.1-381. Available from: http://dx.doi.org/10.1136/bmjspcare-2018-mariecurie.55
- Hutchinson K, Ryder T, Coleman H, Nullwala R, Herkes G, Bleasel A, et al. Determining the role and responsibilities of the community epilepsy nurse in the management of epilepsy. J Clin Nurs [Internet]. 2023;32(13–14):3730–45. Available from: http://dx.doi.org/10.1111/jocn.16582
- Kessler D, Hatch S, Alexander L, Grimes D, Côté D, Liddy C, et al. The integrated parkinson’s disease care network (IPCN): Qualitative evaluation of a new approach to care for parkinson’s disease. Patient Education and Counseling. 2021 Jan;104(1):136–42. Available from: https://pubmed.ncbi.nlm.nih.gov/32660740/
- Kierkegaard, M. Gottberg, K. Johansson, S. Littorin, S. Sandstedt, P. Ytterberg, C. Holmqvist, L. Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis-An Observational Study. Journal of neuromuscular. 2021;8(6):1079–88. Available from: https://pubmed.ncbi.nlm.nih.gov/34057094/
- Lennaerts H, Steppe M, Munneke M, Meinders MJ, van der Steen JT, Van den Brand M, et al. Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionals. BMC Palliat Care [Internet]. 2019;18(1):53. Available from: http://dx.doi.org/10.1186/s12904-019-0441-6
- Linnavuori E, Leino-Kilpi H, Stolt M. Healthcare professionals’ electroencephalography competency: A disconnect between self-assessment and objective testing. J Neurosci Nurs [Internet]. 2022;54(4):153–8. Available from: http://dx.doi.org/10.1097/JNN.0000000000000653
- Locatelli G, Ausili D, Stubbings V, Di Mauro S, Luciani M. The epilepsy specialist nurse: A mixed-methods case study on the role and activities. Seizure [Internet]. 2021;85:57–63. Available from: http://dx.doi.org/10.1016/j.seizure.2020.12.013
- Manzanares I, Sevilla Guerra S, Peña-Ceballos J, Carreño M, Palanca M, Lombraña M, et al. The emerging role of the advanced practice epilepsy nurse: A comparative study between two countries. J Clin Nurs [Internet]. 2021;30(9–10):1263–72. Available from: http://dx.doi.org/10.1111/jocn.15669
- Methley AM, Chew-Graham C, Campbell S, Cheraghi-Sohi S. Experiences of UK health-care services for people with Multiple Sclerosis: a systematic narrative review. Health Expect [Internet]. 2015;18(6):1844–55. Available from: http://dx.doi.org/10.1111/hex.12228
- MS Nurse Pro [Internet]. 2024 [cited 04/APR/2024]. Available from: https://msnursepro.org/
- Multiple Sclerosis Specialist Nurse Association (MSSNA). The Multiple Sclerosis Specialist Nurse Competency Framework [Internet]. MSSNA; 2024 [cited 04/APR/2024]. Available from: https://ukmssna.org.uk/wp-content/uploads/2024/02/UKMSSNA-Competency-Booklet.pdf
- Naik P. Multiple sclerosis specialist nursing in the UK: results from the 2021 MS Trust nurse mapping survey. Br J Neurosci Nurs [Internet]. 2022;18(1):47–50. Available from: http://dx.doi.org/10.12968/bjnn.2022.18.1.47
- National Institute for Health and Care Excellence (NICE). Epilepsies in children, young people and adults [Internet]. NICE; 2022 [cited 04/APR/2024]. Available from: https://www.nice.org.uk/guidance/ng217/resources/epilepsies-in-children-young-people-and-adults-pdf-66143780239813
- National Institute for Health and Care Excellence (NICE). Motor neurone disease: assessment and management [Internet]. NICE; 2019 [cited 10/APR/2024]. Available from https://www.nice.org.uk/guidance/ng42/resources/motor-neurone-disease-assessment-and-management-pdf-1837449470149
- National Institute for Health and Care Excellence (NICE). Multiple Sclerosis in Adults: Management [Internet]. NICE; 2022 [cited 04/APR/2024]. Available from: https://www.nice.org.uk/guidance/ng220/resources/multiple-sclerosis-in-adults-management-pdf-66143828948677
- National Institute for Health and Care Excellence (NICE). Parkinson’s Disease in Adults [Internet]. NICE; 2017 [cited 04/APR/2024]. Available from: https://www.nice.org.uk/guidance/ng71/resources/parkinsons-disease-in-adults-pdf-1837629189061
- Parkinson’s Disease Nurse Specialist Association (PDNSA). Competencies: A competency framework for nurses working in Parkinson’s disease management [Internet]. PDNSA; 2016 [cited 04/APR/2024]. Available from: https://www.parkinsons.org.uk/sites/default/files/2017-12/competency_framework_for_parkinsons_nurses_2016.pdf
- Péloquin S, Schmierer K, Leist TP, Oh J, Murray S, Lazure P. Challenges in multiple sclerosis care: Results from an international mixed-methods study. Mult Scler Relat Disord [Internet]. 2021;50(102854):102854. Available from: http://dx.doi.org/10.1016/j.msard.2021.102854
- Pennington M, Ring H, Howlett J, Smith C, Redley M, Murphy C, et al. The impact of an epilepsy nurse competency framework on the costs of supporting adults with epilepsy and intellectual disability: findings from the EpAID study. J Intellect Disabil Res [Internet]. 2019;63(12):1391–400. Available from: http://dx.doi.org/10.1111/jir.12679
- Pitts E, Wylie K, Loftus AM, Cocks N. Communication strategies used by Parkinson’s nurse specialists during healthcare interactions: A qualitative descriptive study. J Adv Nurs [Internet]. 2022;78(6):1773–86. Available from: http://dx.doi.org/10.1111/jan.15196
- Prell T, Siebecker F, Lorrain M, Tönges L, Warnecke T, Klucken J, et al. Specialized staff for the care of people with Parkinson’s disease in Germany: An overview. J Clin Med [Internet]. 2020;9(8):2581. Available from: http://dx.doi.org/10.3390/jcm9082581
- Rieckmann P, Boyko A, Centonze D, Elovaara I, Giovannoni G, Havrdová E, et al. Achieving patient engagement in multiple sclerosis: A perspective from the multiple sclerosis in the 21st Century Steering Group. Mult Scler Relat Disord [Internet]. 2015;4(3):202–18. Available from: http://dx.doi.org/10.1016/j.msard.2015.02.005
- Royal College of Nursing (RCN). MND Resource [Internet]. RCN; 2024 [cited from 10/APR/2024]. Available from: https://www.rcn.org.uk/clinical-topics/Neuroscience-nursing/MND-Resource
- Samari B, Sadeghian E, Sattari M, Aghaie B. Explaining the dimensions of specific competence in training specialist nurses in multiple sclerosis: a qualitative study. Frontiers of Nursing [Internet]. 2022;9(3):311–7. Available from: http://dx.doi.org/10.2478/fon-2022-0040
- Scotland. NHS Education for Scotland (NES). Four Pillars of Practice [Internet]. NHS Education for Scotland (NES); 2024 [cited 04/APR/2024]. Available from: https://www.nmahpdevelopmentframework.nes.scot.nhs.uk/post-reg-framework/four-pillars-of-practice/
- Scotland. NHS Education for Scotland (NES). Levels of Practice [Internet]. NHS Education for Scotland (NES); 2024 [cited 04/APR/2024]. Available from: https://www.nmahpdevelopmentframework.nes.scot.nhs.uk/post-reg-framework/levels-of-practice/
- Scotland. NHS Education for Scotland (NES). NMAHP Development Framework and the Scottish Credit and Qualifications Framework (SCQF) [Internet]. NHS Education for Scotland (NES); 2024 [cited 04/APR/2024]. Available from: https://www.nmahpdevelopmentframework.nes.scot.nhs.uk/post-reg-framework/nmahp-development-framework-the-scottish-credit-qualifications-framework-scqf/
- Scotland. NHS Education for Scotland (NES). Nursing, midwifery and allied health professionals (NMAHP) development framework [Internet]. NHS Education for Scotland (NES); 2024 [cited 04/APR/2024]. Available from: https://www.nmahpdevelopmentframework.nes.scot.nhs.uk/
- Scotland. The Scottish Government. Illnesses and long-term conditions: Neurological Conditions. [Internet] The Scottish Government; 2024 [cited 11/APR/2024]. Available from: https://www.gov.scot/policies/illnesses-and-long-term-conditions/neurological-conditions/
- Scotland. The Scottish Government. Neurological care and support: Framework for action 2020-2025. [Internet] The Scottish Government; 2022 [cited 11/APR/2024]. Available from: https://www.gov.scot/publications/neurological-care-support-scotland-framework-action-2020-2025/4
- Scotland. The Scottish Government. Neurological Conditions: Estimating prevalence in Scotland of selected conditions using General Practice and Hospital Admissions datasets. [internet] The Scottish Government; 2022 [cited 04/APR/2024]. Available from: https://www.gov.scot/binaries/content/documents/govscot/publications/statistics/2022/12/neurological-conditions-estimating-prevalence-scotland-selected-conditions-using-gp-hospital-admissions-datasets/documents/neurological-conditions-estimating-prevalence-scotland-selected-conditions-using-general-practice-hospital-admissions-datasets/neurological-conditions-estimating-prevalence-scotland-selected-conditions-using-general-practice-hospital-admissions-datasets/govscot%3Adocument/neurological-conditions-estimating-prevalence-scotland-selected-conditions-using-general-practice-hospital-admissions-datasets.pdf
- Scotland. The Scottish Government. Paper 08: Review of Clinical Nurse Specialist and Nurse Practitioner Roles within Scotland [Internet]. The Scottish Government; 2021 [cited 04/APR/2024]. Available from: https://policyonline.nhslothian.scot/wp-content/uploads/2023/03/CNOD_Paper_8_Review_of_Clinical_Nurse_Specialist_and_Nurse_Practitioner_Roles_within_Scotland.pdf
- Severo AH, Carvalho ZM de F, Lopes MV de O, Brasileiro RSF, Braga DC de O. Impaired Verbal Communication: diagnosis review in patients with Amyotrophic Lateral Sclerosis. Rev Bras Enferm [Internet]. 2018;71(6):3063–73. Available from: http://dx.doi.org/10.1590/0034-7167-2017-0763
- The Anne Rowling Regenerative Neurology Clinic. MND Advanced Clinical Nurse Specialist Pillars of Practice Competencies- Band 7 [Internet]. CARE-MND; 2019 [cited 10/APR/2024]. Available from: https://www.care-mnd.org.uk/wp-content/uploads/2019/11/MND-Advanced-Clinical-Nurse-Specialist-Pillars-of-Practice-Competencies-%E2%80%93-Band-7-v1.0-Nov-2019.pdf
- United Kingdom. Department of Health. Agenda for Change [Internet]. Department of Health; 2004 [cited 04/APR/2024]. Available from: https://webarchive.nationalarchives.gov.uk/ukgwa/20041019171927/http://www.dh.gov.uk/PolicyAndGuidance/HumanResourcesAndTraining/ModernisingPay/AgendaForChange/fs/en
- United Kingdom. Nursing and Midwifery Council (NMC). The Code [Internet]. Nursing and Midewifery Council; 2018 [cited 04/APR/2024]. Available from: https://www.nmc.org.uk/globalassets/sitedocuments/nmc-publications/nmc-code.pdf
- United Kingdom. Skills for Health. Key Elements of the Career Framework [Internet]. Skills for Health; 2010 [cited 22/MAY/2024]. Available from: https://www.skillsforhealth.org.uk/wp-content/uploads/2020/11/Career_framework_key_elements.pdf
- University Hospitals Plymouth NHS Trust. Multiple Sclerosis Nurse Specialist Job Summary and Description [Internet]. NHS Jobs; 2024 [cited 04/APR/2024]. Available from: https://www.jobs.nhs.uk/candidate/jobadvert/C9216-23-1464