The effect of neuropalliative care on quality of life and satisfaction with quality of care in patients with progressive neurological disease and their family caregivers: an interventional control study

BMC Palliative Care

Radka Kozáková¹  Radka Bužgová¹  Michal Bar² 

[1] Department of Nursing and Midwifery, Faculty of Medicine, University of Ostrava, Syllabova 19, 700 30, Ostrava, Czech Republic;Neurology clinic, The University Hospital Ostrava, Ostrava, Czech Republic;

关键词: Quality of life;    Palliative care;    Symptoms burden;    Subjective assessment;   

DOI  :  10.1186/s12904-020-00651-9

来源: Springer

【 摘 要 】

BackgroundIt is recommended that patients with progressive neurological disease (PND) receive general and specialized palliative care. The purpose of this study was to determine the effect of neuropalliative care on quality of life (QoL) and satisfaction with provided care in both patients with PND in advanced stages of disease and their family caregivers.MethodsThe sample consisted of 151 patients with PND and 140 family caregivers. The PNDQoL questionnaire was used for data collection. Patients and family caregivers completed the questionnaires both before and 3 months after the intervention.ResultsBefore intervention, there were no statistically significant differences in the individual domains of QoL in patients and family caregivers in either the intervention or the control group. After intervention, differences were identified in the sample of patients in the domains of symptoms burden (p < 0.001), emotional (p < 0 .001), social functioning (p = 0.046), spiritual area (nonreligious) (p = 0.050), and in QoL. In the sample of family caregivers, there were differences in the domains of symptoms burden (p < 0.001), emotional functioning (p = 0.016), spiritual area (nonreligious) (p = 0.042), and in the assessment of health (p = 0.002), and QoL (p = 0.002). Patients and family caregivers from the intervention group evaluated their satisfaction with the quality of care provided significantly more positively in all five analyzed domains.ConclusionThe provision of neuropalliative care to patients with advanced stages of PND helped to maintain and slightly improve their QoL, and symptoms burden, and resulted in a more positive assessment of satisfaction with the quality of care provided.

【 授权许可】

CC BY