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

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.