Quality of life of patients with Parkinson’s disease and their families

Keywords

quality of life
patient
family member
Parkinson ‘s disease

Abstract

QUALITY OF LIFE OF PATIENTS WITH PARKINSON’S DISEASE AND THEIR FAMILIES

Aim. The purpose was to determine the quality of life of Parkinson’s disease patients and their family members and to identify the factors that affect it.

Material and methods. The research sample included 183 patients with Parkinson’s disease and 78 family members. Quality of life was assessed using the Czech Quality of Life Questionnaire of Patients with Progressive Neurological Disease.

Results. Patients with a longer duration of the disease had a lower overall quality of life. The connection between higher dependence of patients on daily activities, and higher degree of motor disability was associated with a poorer quality of life in patients. In family members, an association was demonstrated between older age and a lower quality of life in the domain of normal daily activity, social and spiritual area. With older age, the higher burden of symptoms also increased and deteriorated overall quality of life. The connection between higher dependence of patients on daily activities and a worse quality of life of caregivers in the three domain was confirmed.

Conclusions. Regular assessment of the impact of Parkinson’s disease on the quality of life of patients and their family and the identification of factors that affect it can help prioritize the treatment planning phase.

References

1. Rizza F, Gison A, Bonasi S, et al. Locus of control, health-related quality of life, emotional distress, and disability in Parkinson’s disease. J, Health Psychology. 2017; 22(7): 844-852.

2. Kozáková R, Bužgová R, Bar M. The effect of targeted interventions on the unmet needs for health and social support services in patients with progressive neurological disease: an interventional control study. Pielęgniarstwo XXI wieku. 2021; 20(4): 221-225.

3. Barone P, Antonini A, Colosimo C, et al. The PRIAMO study: A multicenter assessment of nonmotor symptoms and their impact on quality of life in Parkinson’s disease. Mov. Disord. 2009; 24(1): 1641-1649.

4. Martinez-Martin P. What is quality of life and how do we measure it? Relevance to Parkinson’s disease and movement disorders. Mov. Disord. 2017; 32(3): 382-392.

5. Rodriguez-Violanta M, Cervatntes-Arriaga A, Corona T, et al. Clinical determinants of quality of life related to health in Mexican patients with Parkinson’s disease. Arch. Med. Res. 2013; 44(2): 110-114.

6. Fox S, Cashell A, Kernohan G, et al. Interviews with Irish healthcare workers from different disciplines about palliative care for people with Parkinson’s disease: a definite role but uncertainty around terminology and timing. BMC Palliat. Care. 2017; 15(8): 15.

7. Zucchella Ch, Bartolo M, Bernini S, et al. Quality of Life in Alzheimer Disease A Comparison of Patients’ and Caregivers’ Points of View. Alzheimer Dis. Assoc. Disord. 2014; 29(1): 50-54.

8. Carod Artal F, Vargas A, Martinez Martin P. Determinants of quality of life in Brazilian patients with Parkinson´s Disease. Mov. Disord. 2007; 22(10): 1408-1415.

9. Bužgová R, Kozáková R. Dotazníky pro hodnocení kvality života pacientů s progresivním neurologickým onemocněním a jejich rodinných příslušníků. Manuál pro uživatele dotazníků. Ostrava: LF OU; 2020.

10. Hoehn M, Yahr M. Parkinsonism: onset, progressiom and mortality. Neurology. 1967; 17(5): 427-442.

11. Schwab RS, England AC. Projection technique for evaluating surgery in Parkinson’s disease. In: Gillingham FJ, Donaldson IM (eds). Third symposium on Parkinson’s disease. Edinburgh: E. and S. Livingstone 1969, p. 152-157.

12. Mahoney FI, Barthel D. Functional evaluation: the Barthel Index. Md. State Med. J. 1965; 14: 61-65.

13. Kadastik-Eerme L, Rosenthal M, Paju T, et al. Health-related quality of life in Parkinson’s disease: a cross-sectional study focusing on nonmotor symptoms. Health Qual. Life outcomes. 2015; 13(83): 1-8.

14. Ozdilek B and Gultekin B. Suicidal behavior among Turkish patients with Parkinson’s disease. Neuropsychiatr. Dis. Treat. 2014; 10: 541-545.

15. Takahashi K, Kamide N, Makoto S, et al. Quality of life in people with Parkinson’s disease: the relevance of social relationships and communication. J. Phys. Ther. Sci. 2016; 28(2), 541-546.

16. Škorvánek M, Goldma J, Jananhahi M, et al. Global scales for cognitive screening in Parkinson’s disease: Critique and recommendations, Mov. Disord. 2018; 33(2): 208¬218.

17. Kudlicka A, Clare L, Hindl J. Quality of life, health status, and caregiver burden in Parkinson’s disease: relationship to executive functioning. Int. J. Geriatr. Psychiatry. 2013; 29(1): 68-76.

18. Moreira R, Zonta M, Serra de Arajo A, et al. Quality of life in patients with Parkinson’s disease: progression markers in mild to moderate stages. Arq. Neuropsiquiat. 2017; 75(8): 497-502.

19. Terriff D, Williams J, Patten S, et al. Patterns of disability, care needs, and quality of life of people with Parkinson’s disease in a general population sample. Parkinsonism Relat. Disord. 2012; 18(7): 828-832.

20. Grün D, Pieri V, Vaillant M, et al. Contributory Factors to Caregiver Burden in Parkinson Disease. J. Am. Med. Dir. Assoc. 2016; 17(7): 626-632.

21. Razali R, Ahmad R, Fairuz M, et al. Burden of care among caregivers of patients with Parkinson’s disease: A cross-sectional study. Clin. Neurol. Neurosurg. 2011; 113(8): 639-643.

22. Morley D, Dummet S, Kelly L. Factors Influencing Quality of Life in Caregivers of People with Parkinson’s Disease and Implications for Clinical Guidelines. Parkinsons Dis. 2012; 190901: 1-6.

23. Zhong L, Song Y, Cao H, et al. The non-motor symptoms of Parkinson’s disease of different motor types in early stage. Eur. Rev. Med. Pharmacol. Sci. 2017; 21(24): 5745-5750.

24. McLaughlin D, Hasson F, Kernohan G, et al. Living and coping with Parkinson’s disease: perceptions of informal carers. Palliat. Med. 2011; 25(2): 177-182.

25. Wija P. Poskytování a financování dlouhodobé péče v zemích OECD (III) – poskytování neformální péče a její dopad na zaměstnanost a zdraví [online]. Praha: ÚZIS ČR; 2012.

26. Mosley P, Moodie R, Dissanayaka N. Caregiver Burden in Parkinson Disease: A Critical Review of Recent Literature. J. Geriatr. Psychiatry Neurol. 2017; 30(5): 235-252.

27. Geissler H, Holeňová A, Horová T, et al. Jak podporovat pečující na regionální a lokální úrovni? Příklady dobré praxe. Praha: Fond dalšího vzdělávání; 2019.

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