Effect of a neuropalliative care intervention on quality of life in patients with progressive neurological disease – interventional study

Authors: R. Bužgová 1;  R. Kozáková 1;  M. Bar 2;  M. Škutová 1,2;  P. Ressner 2;  P. Bártová 2;  J. Horáková 2
Authors‘ workplace: Ústav ošetřovatelství a porodní asistence, LF OU, Ostrava 1;  Neurologická klinika FN Ostrava 2
Published in: Cesk Slov Neurol N 2020; 83/116(3): 291-297
Category: Original Paper
doi: 10.14735/amcsnn2020291


Aim: The aim of the research was to find out the importance of neuropalliative care for improving the quality of life, burden of symptoms and satisfaction with care of patients with progressive neurological disease in an advanced stage of the disease and their family members.

Patients and methods: The sample consisted of 48 patients with progressive neurological disease and 41 family members. The Czech questionnaire Quality of Life of Patients with Progressive Neurological Disease (PNDQoL) was used for data collection. It contains a symptomatic scale (11 items), a functional scale (32 items; 4 domains) and a questionnaire for satisfaction evaluation. Patients and family members completed questionnaires before the intervention and 2–3 months after it.

Results: The first measurement did not establish statistically significant differences in the individual domains of quality of life either in patients or family members included in the intervention and control group. Repeated measurement after the intervention showed differences in all domains of quality of life in patients (P = 0.001–0.043), in the sample of family members only in the domains of activities of daily living (P = 0.039), social functioning (P = 0.031), spiritual domain (P = 0.047) and in the assessment of overall health (P = 0.029) and overall quality of life (P = 0.025).

Conclusion: The provision of neuropalliative care to patients with progressive neurological disease in an advanced stage of the disease led to the maintenance and slight improvement of their quality of life and symptom burden. However, the quality of life in patients with routine care has become worse.


quality of life – palliative care – symptom burden – subjective assessment


1. Voltz R, Bernat JL, Borasio GD et al. Palliative care in Neurology. New York: Oxford University Press 2004.

2. Mc Veigh, Donaghy C, McLaughlin B et al. Palliative care for patients with motor neurone disease and their bereaved carers: a qualitative study. BMC Palliat Care 2019; 18 (1): 39. doi: 10.1186/s12904-019-0423-8.

3. Sepúlveda C, Marlin A, Yoshida T et al. Palliative care: The World Health Organization’s global perspective. J Pain Symptom Manage 2002; 24 (2): 91–95. doi: 10.1016/s0885-3924 (02) 00440-2.

4. Bede P, Hardiman O, O’Brannagain D. An integrated framework of early intervention palliative care in motor neurone disease and as a model to progressive neurodegenerative diseases.

5. Bužgová R, Kozáková R, Bar M et al. Implementation of a concept of neuropalliative and rehabilitation care for patients with progressive, neurological disease in the Czech Republic: qualitative study. In: Thygesen PL. Neurological diseases: from dia­gnosis to treatment. New York: Nova Science Publisher, Inc. 2019: 73–93.

6. van Vliet M, Gao W, Di Francesco D. How integrated are neurology and palliative care services? Results of a multicentre mapping exercise. BMC Neurol 2016; 16 (10): 63. doi: 10.1186/s12883-016-0583-6.

7. Boesma I, Miyasaki J, Kutner J et al. Palliative care in neurology. Time for a paradigm shift. Neurology 2014; 83 (5): 561–567. doi: 10.1212/WNL.0000000000000674.

8. Oliver DJ, Borasio GD, Caraceni AA. consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol 2016; 23 (1): 30–38. doi: 10.1111/ene.12889.

9. Bužgová R, Bar M, Batrová P et al. Neuropaliativní a rehabilitační péče u pacientů v pokročilé fázi progresivních neurologických onemocnění. Cesk Slov Neurol N 2018; 81/114 (1): 17–23. doi: 10.14735/amcsnn201717.

10. Hnilicová H. Kvalita života a její význam pro medicínu a zdravotnictví. In: Payne et al (eds). Kvalita života a zdraví. Praha: Triton 2005: 205–216.

11. Bartlová S, Matulay S. Sociologie zdraví, nemoci a rodiny. Martin: Nakladatelství Osveta 2009.

12. Galvin M, Madden C, Maguire S et al. Patient journey to a specialist amyotrophic lateral sclerosis multidisciplinary clinic: an exploratory study. BMC Health Serv Res 2015; 15: 571. doi: 10.1186/s12913-015-1229-x.

13. Andersen PM, Borasio GD, Dengler R et al. The EFNS task force on dia­gnosis and management of amyotrophic lateral sclerosis. EFNS guidelines on the clinical management of ALS – revised report of an EFNS task force. Eur J Neurol 2012; 19 (3): 360–375. doi: 10.1111/j.1468-1331.2005.01351.x.

14. Edmonds P, Hart S, Wei Gao 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. doi: 10.1177/1352458510364632.

15. Hasson F, Kernohan WG, McLaughlin, M et al. An exploration into the palliative and end-of-life experiences of cares of people with Parkinson disease. Palliat Med 2010; 24 (7): 731–736. doi: 10.1177/0269216310371414.

16. Veronese S, Gallo G, Valle A et al. Specialist palliative care improves the quality of life in advanced neurodegenerative disorders. BMJ Support Palliat 2015; 7 (2): 164–172. doi: 10.1136/bmjspcare-2014-000788.

17. Higginson IJ, McCrone P, Hart SR et al. Is short-term palliative care cost effective in multiple sclerosis. A randomized phase II trial. J Pain and Symptom Management 2009; 38 (6): 816–826. doi: 10.1016/j.jpainsymman.2009.07.002.

18. Dufek M. Roztroušená skleróza – EDSS (expanded disability status scale), tzv. Kurtzkeho škála. Neurol praxi 2011; 12 (Suppl G): 6–9.

19. Cedarbaum JM, Stambler N. Performance of the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS) in multicenter clinical trials. J Neurol Sci 1997; 152 (Suppl 1): S1–S9.

20. 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: 152–157.

21. Anderson F, Downing GM, Hill J et al. Palliative Performance Scale (PPS): a new tool. J Palliative Care 1996; 12 (1): 5–11.

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

23. Bužgová R, Kozáková R. Dotazníky pro hodnocení kvality života pacientů s progresivním neurologickým onemocněním a jejich rodinných příslušníků. Manuál pro uživatele dotazníků. Ostrava: Lékařská fakulta Ostravská univerzita 2020.

24. Hasson F, Nicholson E, Muldrew D et al. International palliative care research priorities: a systematic review. BMC Palliat Care 2020; 19 (1): 16. doi: 10.1186/s12904-020-0520-8.

25. Kurucová R. Zátěž pečovatele: posuzování, dia­gnostika, intervence a prevence v péči o nevyléčitelně nemocné. Praha: Grada Publishing 2016.

26. Dallara A, Tolchin D. Emerging subspecialties in neurology: palliative care. Neurol 2014; 82 (18): 640–642. doi: 10.1212/WNL.0000000000000121.

27. Bishop M. Quality of life and psychosocial adaptation to chronic illness and acquired disability: a conceptual and theoretical synthesis. J Rehabil 2005; 71: 5–13. doi: 10.1177/00343552050480040301.

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