Neuropalliative Care in Patients with Progressive Neurological Disease in Czech Republic: Study Protocol
Introduction: Currently, there has been an increasing concern about the provision of palliative care in non-oncological patients in both professional literature and clinical practice. However, there is not much scientific information on how to provide neurological and palliative care together. The main objective of the project is to create and to verify a concept of neuro-palliative and rehabilitative care for patients with selected neurological diseases in an advanced stage of the disease and also to evaluate bio-psychosocial and spiritual needs of these patients and their caregivers related to the quality of life using created standardized tools. Methodology: Triangulation of research methods (qualitative and quantitative) will be used. A concept of care and assessment tools will be developed by analyzing interviews and focus groups. Qualitative data will be analyzed using grounded theory. The concept of care will be tested in the context of the intervention study. Using quantitative analysis, we will assess the effect of an intervention provided on the saturation of needs, quality of life, and quality of care. A research sample will be made up of the patients with selected neurological diseases (Parkinson´s syndrome, motor neuron disease, multiple sclerosis, Huntington’s disease), together with patients´ family members. Based on the results, educational materials and a certified course for health care professionals will be created. Findings: Based on qualitative data analysis, we will propose the concept of integrated care model combining neurological, rehabilitative and specialist palliative care for patients with selected neurological diseases in different settings of care and services. Patients´ needs related to quality of life will be described by newly created and validated measuring tools before the start of intervention (application of neuro-palliative and palliative approach) and then in the time interval. Conclusion: Based on the results, educational materials and a certified course for doctors and health care professionals will be created.
Digital Object Identifier (DOI): doi.org/10.5281/zenodo.1316520Procedia APA BibTeX Chicago EndNote Harvard JSON MLA RIS XML ISO 690 PDF Downloads 484
 B. Skála et al., Paliativní péče o pacienty v terminálním stádiu nemoci. Doporučený diagnostický a léčebný postup pro všeobecné praktické lékaře. Centrum doporučených postupů pro praktické lékaře, 2011.
 WHO. Atlas multiple sclerosis resources in the world. Geneva: WHO, 2008.
 J. Bednařík, Klinická neurologie II. Praha, Triton, 2010.
 J. Hussain, et al., “End-of-life care in neurodegenerative conditions: outcomes of a specialist palliative neurology service”, International Journal of Palliative Nursing, vol. 19, no. 4, pp. 162-169, 2013.
 P. Ridzoň, R. Mazanec, “Paliativní péče u terminálních stavů chorob motorického neuronu (amyotrofické laterární sklerózy, progresivní bulbární paralýzy a progresivní svalové atrofie)”, Neurologie pro praxi, vol. 11, no. 1, pp. 23-26, 2010.
 E. Beghi, “The epidemiology of ALS and the role of population-based registries,” Biochemical et biophysical acts, vol. 1762, no. 11-12, pp. 1150-1157, 2006.
 D.G. MacMahon, S. Thomas, “Practical approach to quality of life in Parkinson´s disease: the nurse´s role,” Journal of neurology, vol. 245, no. suppl1, pp. 19-22, 1998.
 M. Vliet, et al., “How integrated are neurology and palliative care services? Results of a multicentre mapping exercise.” BMC Neurology, vol. 16, pp. 63, 2016.
 R. Fitzpatrick, et al., The needs and experiences of services by individuals with long-term progressive neurological conditions and their carers. A Benchmarking study. Oxford: University of Oxford, 2010.
 M. Gibbens, “The caring balance,” MS in focus, vol. 9, pp. 6-9, 2007.
 F. Lindop, et al., “Atypical Parkinsonism: Making the case for a neuropalliative rehabilitation approach.” International Journal of Therapy and Rehabilitation, vol. 21, no. 4, pp. 176-182, 2014.
 L. Turner-Stokes, et al., “From diagnosis to death: Exploring the interface between neurology, rehabilitation and palliative care, in the management of people with long term neurological conditions.” Clinical Medicine, vol. 7, no. 2, pp. 129-236, 2007.
 L. Sutton, “Addressing palliative and end-of-life care needs in neurology.” British journal of neuroscience nursing, vol. 4, no. 5, pp. 235-238, 2008.
 D.E. Meier, “Palliative care in hospitals,” Journal of Hospital Medicine, vol. 1, no. 1, pp. 21-28, 2006.
 O. Sláma, L. Kabelka, M. Špinková, Paliativní péče v ČR v roce 2013. Praha a Brno: Perspektiva České společnosti paliativní medicíny ČLS JEP, 2013.
 M. Mijovský, Kvalitativní přístup a metody v psychologickém výzkumu. Praha: Grada, 2006.
 B.G. Glaser, A.L. Strauss, The discovery of grounded theory. New York: Aldine, 1967.
 A.L. Strauss, J. Corbin, Basics of qualitative research. London: Sage, 1990.
 J. Hendl, Kvalitativní výzkum. Základní teorie, metody a aplikace, Praha: Portál, 2008.
 O. Švestková, “Mezinárodní klasifikace funkčních schopností, disability a zdraví (ICF) – kvantitativní měření kapacity a výkonu,” Česká a slovenská neurologie a neurochirurgie. vol. 72, no. 6, pp. 580-586, 2009.
 C.B. Terwee, S.D.M. Bot, M.R. Boer, “Quality criteria were proposed for measurement properties of health status questionnaires.” Journal of Clinical Epidemiology, vol. 60, no. 1, pp. 34-42, 2007.