Palliative care of patients with Parkinson's disease
Abstract
Parkinson's disease is a chronic, progressive, neurodegenerative disease that most often affects elderly people. The disease is characterized by a wide range of motor and non-motor symptoms, which, as the disease progresses, lead to significant disability, dependence on other people, and impaired quality of life. Currently, there is no medicine that can cure or stop the progression of the disease. With palliative care with a holistic approach and the involvement of a multidisciplinary team, most symptoms can be kept under control and provide support to caregivers, which significantly contributes to a better quality of life for both patients and their families, i.e., caregivers.
References
1. Chen Y, Zhang R, Lou Y, Li W, Yang H. Facilitators and barriers to the delivery of palliative care to patients with Parkinson's disease: a qualitative study of the perceptions and experiences of stakeholders using the socio-ecological model. BMC Health Serv Res 2023; 23(1): 215.
2. Simon DK, Tanner CM, Brundin P. Parkinson disease epidemiology, pathology, genetics, and pathophysiology. Clin Geriatr Med 2020; 36(1): 1-12.
3. Oliver D, Veronese S. Specialist palliative care for Parkinson's disease. Ann Palliat Med 2020; 9(Suppl 1): S52-S62.
4. Katz M. Palliative care for Parkinson's spectrum disorders: an emerging approach. Neurotherapeutics 2020; 17(4): 1456-63.
5. Lum HD, Kluger BM. Palliative care for Parkinson disease. Clin Geriatr Med 2020; 36(1): 149-57.
6. Ng JSC. Palliative care for Parkinson's disease. Ann Palliat Med 2018; 7(3): 296-303.
7. Wang Z, Wang Y, Wang ZY, et al. Palliative care for Parkinson’s disease patients and their caregivers. Life Res 2022; 5(2): 4.
8. Post B, van den Heuvela L, van Prooijea T, van Ruissena X, van de Warrenburga B, Nonnekesb J. Young onset Parkinson’s disease: a modern and tailored approach. J Parkinsons Dis 2020; 10: S29–S36.
9. Armstrong MJ, Okun MS. Diagnosis and treatment of Parkinson disease: a review. JAMA 2020; 323(6): 548-60.
10. World Health Organization. Parkinson disease. Geneva: World Health Organization, 2023. (https://www.who.int/news-room/fact-sheets/detail/parkinson-disease).
11. Massano J, Bhatia KP. Clinical approach to Parkinson's disease: features, diagnosis, and principles of management. Cold Spring Harb Perspect Med 2012; 2(6): a008870.
12. Tarakad A, Jankovic J. Diagnosis and management of Parkinson's disease. Semin Neurol 2017; 37(2): 118-26.
13. Moustafa AA, Chakravarthy S, Phillips JR, et al. Motor symptoms in Parkinson's disease: a unified framework. Neurosci Biobehav Rev 2016; 68: 727-40.
14. Chakraborty A, Brauer S, Diwan A. A review of possible therapies for Parkinson's disease. J Clin Neurosci 2020; 76: 1-4.
15. Provinciali L, Carlini G, Tarquini D, Defanti CA, Veronese S, Pucci E. Need for palliative care for neurological diseases. Neurol Sci 2016; 37(10): 1581-7.
16. Radbruch L, Payne S. White Paper on standards and norms for hospice and palliative care in Europe: part 1. Recommendations from the European association for palliative care. Eur J Palliat Care 2009; 16(6): 278-89. http://www.thewhpca.org/images/resources/npsg/Radbruch%202009%20EAPC%20White%20~standards%20part1%20EJPC.pdf
17. World Health Organization. Palliative care. Geneva: World Health Organization, 2020. (https://www.who.int/news-room/fact-sheets/detail/palliative-care).
18. Taylor LP, Besbris JM, Graf WD, Rubin MA, Cruz-Flores S, Epstein LG. Ethics, law, and humanities committee, a joint committee of the American academy of neurology, American neurological association, and Child neurology society. Clinical guidance in neuropalliative care: an AAN position statement. Neurology 2022; 98(10): 409-16.
19. Lokk J, Delbari A. Clinical aspects of palliative care in advanced Parkinson's disease. BMC Palliat Care 2012; 11: 20.
20. Fleisher JE, Klostermann EC, Hess SP, Lee J, Myrick E, Chodosh J. Interdisciplinary palliative care for people with advanced Parkinson's disease: a view from the home. Ann Palliat Med 2020; 9(Suppl 1): S80-S89.
21. Gabriel LB, Rossetto EM, Martins VB, Berbert MCB. Speech therapy aspects in patients’ palliative care. Rev. CEFAC 2021; 23(6): e10421.
22. van der Marck MA, Kalf JG, Faber MJ, Bloem BR. Nonpharmacologic multidisciplinary approach to the treatment of Parkinson’s disease. In: Jankovic J, Tolosa E, eds. Parkinson’s disease and movement disorders. 6th ed. Philadelphia: Wolters Kluwer, 2015: 1322-44.
23. Chaudhuri KR, Bhidayasiri R, van Laar T. Unmet needs in Parkinson's disease: new horizons in a changing landscape. Parkinsonism Relat Disord 2016; 33 Suppl 1: S2-S8.
24. Wichmann, R. Role of physical therapy in management of Parkinson’s disease. In: Pfeiffer RF, Wszolek ZK, Ebadi M, eds. Parkinson’s disease. 2nd ed. Boca Raton: Taylor and Francis Group, 2013: 937-44.
25. Campbell CW, Jones EJ, Merrills J. Palliative and end-of-life care in advanced Parkinson's disease and multiple sclerosis. Clin Med (Lond). 2010 Jun;10(3):290-2. doi: 10.7861/clinmedicine.10-3-290. PMID: 20726466; PMCID: PMC5873561.
26. Chou KL, Hurtig HI. Tremor, rigidity, and bradykinesia. In: Pfeiffer RF, Wszolek ZK, Ebadi M, eds. Parkinson’s disease. 2nd ed. Boca Raton: Taylor and Francis Group, 2013: 191-201.
27. Rana AQ, Ahmed US, Chaudry ZM, Vasan S. Parkinson's disease: a review of non-motor symptoms. Expert Rev Neurother 2015; 15(5): 549-62.
28. Aarsland D, Steenoven IV, Taylor JP, et al. Neuropsychiatric aspects of Parkinson’s disease. In Jankovic J, Tolosa E, eds. Parkinson’s disease and movement disorders. 6th ed. Philadelphia: Wolters Kluwer, 2015: 370-95.
29. Pfeiffer RF. Non-motor symptoms in Parkinson's disease. Parkinsonism Relat Disord 2016; 22 Suppl 1: S119-22.
30. Perez-Lloret S. Clinical trials in Parkinson's disease. New York: Humana Press, 2021.
31. Pedrosa Carrasco AJ, Timmermann L, Pedrosa DJ. Management of constipation in patients with Parkinson's disease. NPJ Parkinsons Dis 2018; 4: 6.
32. Nair, S. Palliative care in neurological diseases. In: Prabhakar H, Zulfiqar AZ, eds. Textbook of neuroanesthesia and neurocritical care. Singapore: Springer Nature Singapore, 2019: 277-95.
33. Halper J, Holland NJ, eds. Comprehensive nursing care in multiple sclerosis. 3rd. ed. New York: Springer Publishing Company, 2011.
34. Sveinbjornsdottir S. The clinical symptoms of Parkinson's disease. J Neurochem 2016; 139 Suppl 1: 318-24.
35. van Gerpen JA, Castillo P. Insomnia and excessive daytime sleepiness in Parkinson’s disease. In Pfeiffer RF, Wszolek ZK, Ebadi M, eds. Parkinson’s disease. 2nd ed. Boca Raton: Taylor and Francis Group, 2013: 291-300.
36. Videnovic A, Comella CL. REM sleep behavior disorder. In: Pfeiffer RF, Wszolek ZK, Ebadi M, eds. Parkinson’s disease. 2nd ed. Boca Raton: Taylor and Francis Group, 2013: 301-08.
37. Santamaria J. Sleep and fatigue in Parkinson’s disease. In Jankovic J, Tolosa E, eds. Parkinson’s disease and movement disorders. 6th ed. Philadelphia: Wolters Kluwer, 2015: 1084-110.
38. Rosiak K, Zagożdżon P. Quality of life and social support in patients with multiple sclerosis. Psychiatr Pol 2017; 51(5): 923-35.
39. Robinson MT, Holloway RG. Palliative care in neurology. Mayo Clin Proc 2017; 92(10): 1592-601.
40. Prizer LP, Kluger BM, Sillau S, Katz M, Galifianakis N, Miyasaki JM. Correlates of spiritual wellbeing in persons living with Parkinson disease. Ann Palliat Med 2020; 9(Suppl 1): S16-S23.
41. Sokol LL, Young MJ, Paparian J, et al. Advance care planning in Parkinson's disease: ethical challenges and future directions. NPJ Parkinsons Dis 2019; 5:24.
42. Lennaerts H, Steppe M, Munneke M, et al. Palliative care for persons with Parkinson's disease: a qualitative study on the experiences of health care professionals. BMC Palliat Care 2019; 18(1): 53.