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Abstract：
Interest in implementing palliative care for adults living with progressive central nervous system diseases (PCNSD) and their caregivers is increasing.
To inform evidence-based practice and future research by critically evaluating randomized clinical trials (RCTs) investigating palliative care interventions (PCIs) for adults living with PCNSD and their caregivers using self-reported outcomes and the patient- and caregiver-reported outcome measures employed.
A systematic search using PRISMA methods of EMBASE, PubMed, Scopus, Web of Science databases using index and keyword methods for articles published from inception through February 28, 2021 was performed. RCTs investigating PCI as their primary aim using patient- and/or caregiver-reported outcomes to assess PCI effectiveness in adults living with PCNSD and their caregivers were included for qualitative synthesis.
Five RCTs met criteria and used 21 unique outcome measures. Pooled patient diagnoses included multiple sclerosis, motor neuron disease and movement disorders, primarily Parkinson\'s Disease. All five RCTs assessed PCI effectiveness on patient symptom burden and caregiver burden, and three RCTs used patient QOL as a primary outcome. Overall risk of bias was low. Pooled positive findings were limited to very modest changes in patient QOL, specific physical symptoms and caregiver burden. Most outcome measures lacked clinimetric responsiveness to detect change whether caused by disease or an intervention to the patient or caregiver.
Sparse, low-certainty evidence for PCI impact on patient QOL, symptom burden and caregiver burden indicate future research should consider refining study populations, interventions, outcomes assessed and outcome measures to detect any change due to PCI.
To inform evidence-based practice and future research by critically evaluating randomized clinical trials (RCTs) investigating palliative care interventions (PCIs) for adults living with PCNSD and their caregivers using self-reported outcomes and the patient- and caregiver-reported outcome measures employed.
A systematic search using PRISMA methods of EMBASE, PubMed, Scopus, Web of Science databases using index and keyword methods for articles published from inception through February 28, 2021 was performed. RCTs investigating PCI as their primary aim using patient- and/or caregiver-reported outcomes to assess PCI effectiveness in adults living with PCNSD and their caregivers were included for qualitative synthesis.
Five RCTs met criteria and used 21 unique outcome measures. Pooled patient diagnoses included multiple sclerosis, motor neuron disease and movement disorders, primarily Parkinson\'s Disease. All five RCTs assessed PCI effectiveness on patient symptom burden and caregiver burden, and three RCTs used patient QOL as a primary outcome. Overall risk of bias was low. Pooled positive findings were limited to very modest changes in patient QOL, specific physical symptoms and caregiver burden. Most outcome measures lacked clinimetric responsiveness to detect change whether caused by disease or an intervention to the patient or caregiver.
Sparse, low-certainty evidence for PCI impact on patient QOL, symptom burden and caregiver burden indicate future research should consider refining study populations, interventions, outcomes assessed and outcome measures to detect any change due to PCI.
摘要：
背景：对患有进行性中枢神经系统疾病（PCNSD）的成年人及其照顾者实施姑息治疗的兴趣正在增加。
目的：通过严格评估随机临床试验（RCTs），为基于证据的实践和未来的研究提供信息，这些试验使用自我报告的结局以及患者和照顾者报告的结局指标来调查患有PCNSD的成年人及其照顾者的姑息治疗干预（PCI）。
方法：使用EMBASE的PRISMA方法进行系统搜索，PubMed,Scopus,使用索引和关键字方法对从开始到2021年2月28日发表的文章进行了WebofScience数据库。将以患者和/或护理人员报告的结果为主要目的的RCTs进行定性综合，以评估患有PCNSD的成年人及其护理人员的PCI有效性。
结果：5项随机对照试验符合标准，使用了21项独特的结局指标。合并的患者诊断包括多发性硬化症，运动神经元疾病和运动障碍，主要是帕金森病。所有五项RCT均评估PCI对患者症状负担和护理人员负担的有效性。三个RCT将患者生活质量作为主要结果。总体偏倚风险较低。汇总的阳性结果仅限于患者生活质量的非常适度的变化，特定的身体症状和照顾者负担。大多数结局指标缺乏临床反应性，无法检测由疾病或对患者或护理人员的干预引起的变化。
结论：稀疏，PCI对患者生活质量影响的低确定性证据，症状负担和照顾者负担表明未来的研究应该考虑细化研究人群，干预措施，评估结局和检测因PCI引起的任何变化的结局指标。
目的：通过严格评估随机临床试验（RCTs），为基于证据的实践和未来的研究提供信息，这些试验使用自我报告的结局以及患者和照顾者报告的结局指标来调查患有PCNSD的成年人及其照顾者的姑息治疗干预（PCI）。
方法：使用EMBASE的PRISMA方法进行系统搜索，PubMed,Scopus,使用索引和关键字方法对从开始到2021年2月28日发表的文章进行了WebofScience数据库。将以患者和/或护理人员报告的结果为主要目的的RCTs进行定性综合，以评估患有PCNSD的成年人及其护理人员的PCI有效性。
结果：5项随机对照试验符合标准，使用了21项独特的结局指标。合并的患者诊断包括多发性硬化症，运动神经元疾病和运动障碍，主要是帕金森病。所有五项RCT均评估PCI对患者症状负担和护理人员负担的有效性。三个RCT将患者生活质量作为主要结果。总体偏倚风险较低。汇总的阳性结果仅限于患者生活质量的非常适度的变化，特定的身体症状和照顾者负担。大多数结局指标缺乏临床反应性，无法检测由疾病或对患者或护理人员的干预引起的变化。
结论：稀疏，PCI对患者生活质量影响的低确定性证据，症状负担和照顾者负担表明未来的研究应该考虑细化研究人群，干预措施，评估结局和检测因PCI引起的任何变化的结局指标。
