Palliative care in multiple sclerosis Review article
Main Article Content
Abstract
Multiple sclerosis (MS) is a chronic disease that mainly affects young adults and leads to long-term consequences. The outcomes of the nervous system damage do not only cause physical disability but also affect patients’ mental and cognitive function. Moreover, they severely decrease the quality of patients’ life. Despite great progress in immunomodulatory treatment, the number of patients requiring continuous care and being unable to live independently is constantly growing. They should all be provided with palliative care, which in Poland is mainly reserved for oncological patients and rarely includes other groups. The Polish legal system does not provide guaranteed benefits for people with MS requiring palliative and hospice care. Therefore, it is necessary to take action aimed at supporting the most disabled patients who are deprived of the modifying treatment and are only left with symptomatic treatment.
Article Details
Copyright © by Medical Education. All rights reserved.
References
2. Ben-Zacharia A.B., Lublin F.D.: Palliative care in patients with multiple sclerosis. Neurol. Clin. 2001; 19(4): 801-827.
3. Edmonds P., Hart S., Gao W. et al.: Palliative care for people severely affected by multiple sclerosis: evaluation of a novel palliative care service. Mult. Scler. 2010; 16(5): 627-636
4. Voltz R.: Palliative care for multiple sclerosis: a counter-intuitive approach? Mult. Scler. 2010; 16(5): 515-517.
5. Sepúlveda C., Marlin A., Yoshida T., Ullrich A.: Palliative Care: the World Health Organization’s global perspective. J. Pain Symptom. Manage. 2002; 24(2): 91-96.
6. Ciałkowska-Rysz A.: Sytuacja i wyzwania opieki paliatywnej w Polsce. Medycyna Paliatywna 2009; 1: 22-26.
7. Rosati G.: The prevalence of multiple sclerosis in the world: an update. Neurol. Sci. 2001; 22: 117-139.
8. Potemkowski A.: Stwardnienie rozsiane w świecie i w Polsce – ocena epidemiologiczna. Aktualn. Neurol. 2009; 9: 91-97.
9. European MS Platform [online: www.ms-in-europe.com].
10. Wender M., Michałowska-Wender G.: Choroby demielinizacyjne. W: Neurologia. Kozubski W., Liberski P. (red.). PZWL, Warszawa 2004: 379-383.
11. Gruenewald D.A., Higginson I.J., Vivat B. et al.: Quality of life measures for the palliative care of people severely affected by multiple sclerosis: a systematic review. Mult. Scler. 2004; 10: 690-704.
12. Poellmann W., Busch C., Voltz R.: Quality of life in multiple sclerosis. Measures, relevance, problems, and perspectives. Nervenarzt 2005; 76: 154-169.
13. Benedict R.H, Wahlig E., Bakshi R. et al.: Predicting quality of life in multiple sclerosis: accounting for physical disability, fatigue, cognition, mood disorder, personality, and behavior change. J. Neurol. Sci. 2005; 231: 29-34.
14. Pittock S.J., Mayr W.T., McClelland R.L. et al.: Quality of life is favorable for most patients with multiple sclerosis: a population-based cohort study. Arch. Neurol. 2004; 61: 679-686.
15. Stenager E.N., Stenager E., Koch-Henriksen N. et al.: Suicide and multiple sclerosis: an epidemiological investigation. J. Neurol. Neurosurg. Psychiatry 1992; 55: 542-545.
16. Fredrikson S., Cheng Q., Jiang G.X., Wasserman D.: Elevated suicide risk among patients with multiple sclerosis in Sweden. Neuroepidemiology 2003; 22: 146-152.
17. Hearn J., Higginson I.J.: Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. Qual. Health Care 1999; 8(4): 219-227.
18. Anderson F., Downing M.G., Hill J. et al.: Palliative performance scale (PPS): A new tool. J. Palliat. Care 1996; 12: 5-11.
19. Lau F., Downing M.G., Lesperance M. et al.: Use of palliative performance scale in End-of-Life prognostication. J. Palliat. Med. 2006; 9: 1066-1075.
20. Golla H., Galushko M., Pfaff H., Voltz R.: Unmet needs of severely affected multiple sclerosis patients: The health professionals’ view. Palliat. Med. 2012; 26: 139-151.
21. Ciałkowska-Rysz A.: Wskazania do objęcia opieką paliatywną. Medycyna Paliatywna 2010; 2: 6-8.
22. Opara J., Jaracz K., Brola W.: Burden and quality of life in caregivers of persons with multiple sclerosis. Neurol. Neurochir. Pol. 2012; 46(5): 472-9.
23. Brola W., Kasprzyk M., Fudala M., Opara J.: Opieka paliatywna nad pacjentami ze stwardnieniem rozsianym. Medycyna Paliatywna 2013; 5: 41-47.