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.
BMC Palliat Care. 2020 Sep 16;19(1):143. doi: 10.1186/s12904-020-00651-9.
It 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.
The 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.
Before 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.
The 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.
建议患有进行性神经疾病（PND）的患者接受一般和专业的姑息治疗。本研究的目的是确定神经姑息治疗对处于疾病晚期的 PND 患者及其家庭照顾者的生活质量（QoL）和对提供的护理的满意度的影响。
样本由 151 名 PND 患者和 140 名家庭照顾者组成。PNDQoL 问卷用于收集数据。患者和家庭照顾者在干预前和干预后 3 个月都完成了问卷。
在干预前，干预组和对照组的患者和家庭照顾者在 QoL 的各个领域均无统计学显著差异。干预后，患者样本中在症状负担（p<0.001）、情感（p<0.001）、社会功能（p=0.046）、非宗教精神领域（p=0.050）和 QoL 方面存在差异。在家庭照顾者样本中，在症状负担（p<0.001）、情感功能（p=0.016）、非宗教精神领域（p=0.042）和健康评估（p=0.002）以及 QoL 方面存在差异（p=0.002）。干预组的患者和家庭照顾者在所有五个分析领域对所提供的护理质量的满意度评估均更为积极。
为处于 PND 晚期的患者提供神经姑息治疗有助于维持和略微改善他们的 QoL 和症状负担，并对所提供的护理质量的满意度评估更为积极。
