Abstract：
To determine the association of palliative care for progressive neurologic diseases with patient- and caregiver-centered outcomes.
Systematic review and meta-analysis of randomized controlled trials and quasi-experimental studies, including pilot studies.
Adults with progressive neurologic diseases (dementia, multiple sclerosis, Parkinson\'s disease, motor neuron disease, multiple system atrophy, and progressive supranuclear palsy) and their caregivers.
MEDLINE, EMBASE, CINAHL PLUS, Cochrane CENTRAL, and PubMed were searched from inception to September 2021. Two reviewers independently screened studies, extracted data, and assessed risk of bias using the Cochrane risk of bias tools. Narrative synthesis was conducted. Patient quality of life (QoL), symptom burden, caregiver burden, and satisfaction with care were meta-analyzed using a random-effects model.
Fifteen trials provided data on 3431 patients (mean age, 73.9 years). Compared with usual care, palliative care was statistically significantly associated with lower symptom burden [standardized mean difference (SMD), -0.34 (95% Cl, -0.59 to -0.09)] and higher caregiver satisfaction [SMD, 0.41 (95% Cl, 0.12 to 0.71)] and patient satisfaction [SMD, 0.43 (95% Cl, -0.01 to 0.87)]. However, the associations were not significant after excluding studies with high risk of bias. Insignificant associations of palliative care with caregiver burden [SMD, -0.09 (95% Cl, -0.21 to 0.03)] and patient QoL [SMD, 0.19 (95% Cl, -0.07 to 0.44)] were observed.
Palliative care is likely to improve symptom burden and satisfaction with care among patients with progressive neurologic diseases and their caregivers, while its effects on QoL and caregiver burden remains inconclusive. Specific intervention components including interdisciplinary team, palliative care physicians, home visits, and spiritual care appeared to be associated with increased effects on improving palliative outcomes. More rigorous designed studies are warranted to examine the effects of neuropalliative care, effective intervention components, optimal timing, and symptom triggers of palliative care referrals.
Systematic review and meta-analysis of randomized controlled trials and quasi-experimental studies, including pilot studies.
Adults with progressive neurologic diseases (dementia, multiple sclerosis, Parkinson\'s disease, motor neuron disease, multiple system atrophy, and progressive supranuclear palsy) and their caregivers.
MEDLINE, EMBASE, CINAHL PLUS, Cochrane CENTRAL, and PubMed were searched from inception to September 2021. Two reviewers independently screened studies, extracted data, and assessed risk of bias using the Cochrane risk of bias tools. Narrative synthesis was conducted. Patient quality of life (QoL), symptom burden, caregiver burden, and satisfaction with care were meta-analyzed using a random-effects model.
Fifteen trials provided data on 3431 patients (mean age, 73.9 years). Compared with usual care, palliative care was statistically significantly associated with lower symptom burden [standardized mean difference (SMD), -0.34 (95% Cl, -0.59 to -0.09)] and higher caregiver satisfaction [SMD, 0.41 (95% Cl, 0.12 to 0.71)] and patient satisfaction [SMD, 0.43 (95% Cl, -0.01 to 0.87)]. However, the associations were not significant after excluding studies with high risk of bias. Insignificant associations of palliative care with caregiver burden [SMD, -0.09 (95% Cl, -0.21 to 0.03)] and patient QoL [SMD, 0.19 (95% Cl, -0.07 to 0.44)] were observed.
Palliative care is likely to improve symptom burden and satisfaction with care among patients with progressive neurologic diseases and their caregivers, while its effects on QoL and caregiver burden remains inconclusive. Specific intervention components including interdisciplinary team, palliative care physicians, home visits, and spiritual care appeared to be associated with increased effects on improving palliative outcomes. More rigorous designed studies are warranted to examine the effects of neuropalliative care, effective intervention components, optimal timing, and symptom triggers of palliative care referrals.
摘要：
目的：确定进展性神经系统疾病的姑息治疗与以患者和照顾者为中心的结局之间的关系。
方法：随机对照试验和准实验研究的系统评价和荟萃分析，包括试点研究。
方法：患有进行性神经系统疾病的成年人（痴呆，多发性硬化症,帕金森病,运动神经元病,多系统萎缩,和进行性核上性麻痹）及其看护者。
方法：MEDLINE，EMBASE,CINAHLPLUS,科克伦中部,和PubMed从成立到2021年9月进行了搜索。两名审稿人独立筛选研究，提取的数据，并使用Cochrane偏差风险工具评估偏差风险。进行了叙事综合。患者生活质量（QoL），症状负担，照顾者的负担，使用随机效应模型对护理满意度进行荟萃分析。
结果：15项试验提供了3431例患者的数据（平均年龄，73.9年）。与平时护理相比，姑息治疗与较低的症状负担[标准化平均差异（SMD），-0.34（95%Cl，-0.59至-0.09)]和更高的护理人员满意度[SMD，0.41(95%Cl，0.12至0.71)]和患者满意度[SMD，0.43(95%Cl，-0.01至0.87）]。然而,排除具有高偏倚风险的研究后,上述关联并不显著.姑息治疗与照顾者负担之间的关系无关紧要[SMD，-0.09(95%Cl,-0.21至0.03)]和患者QoL[SMD，0.19(95%Cl，观察到-0.07至0.44）]。
结论：姑息治疗可能会改善进行性神经系统疾病患者及其护理人员的症状负担和护理满意度，而其对QoL和照顾者负担的影响仍不确定。具体的干预组成部分，包括跨学科团队，姑息治疗医生，家访,精神护理似乎与改善姑息结局的效果增加有关。有必要进行更严格的设计研究来检查神经姑息治疗的效果，有效的干预成分，最佳时机，和姑息治疗转诊的症状触发因素。
方法：随机对照试验和准实验研究的系统评价和荟萃分析，包括试点研究。
方法：患有进行性神经系统疾病的成年人（痴呆，多发性硬化症,帕金森病,运动神经元病,多系统萎缩,和进行性核上性麻痹）及其看护者。
方法：MEDLINE，EMBASE,CINAHLPLUS,科克伦中部,和PubMed从成立到2021年9月进行了搜索。两名审稿人独立筛选研究，提取的数据，并使用Cochrane偏差风险工具评估偏差风险。进行了叙事综合。患者生活质量（QoL），症状负担，照顾者的负担，使用随机效应模型对护理满意度进行荟萃分析。
结果：15项试验提供了3431例患者的数据（平均年龄，73.9年）。与平时护理相比，姑息治疗与较低的症状负担[标准化平均差异（SMD），-0.34（95%Cl，-0.59至-0.09)]和更高的护理人员满意度[SMD，0.41(95%Cl，0.12至0.71)]和患者满意度[SMD，0.43(95%Cl，-0.01至0.87）]。然而,排除具有高偏倚风险的研究后,上述关联并不显著.姑息治疗与照顾者负担之间的关系无关紧要[SMD，-0.09(95%Cl,-0.21至0.03)]和患者QoL[SMD，0.19(95%Cl，观察到-0.07至0.44）]。
结论：姑息治疗可能会改善进行性神经系统疾病患者及其护理人员的症状负担和护理满意度，而其对QoL和照顾者负担的影响仍不确定。具体的干预组成部分，包括跨学科团队，姑息治疗医生，家访,精神护理似乎与改善姑息结局的效果增加有关。有必要进行更严格的设计研究来检查神经姑息治疗的效果，有效的干预成分，最佳时机，和姑息治疗转诊的症状触发因素。
