Thompson C, Spilsbury K
Department of Health Sciences, Area 2, 1st Floor Research Section, University of York, York, Nth Yorkshire, UK, YO1 5Dd.
Cochrane Database Syst Rev. 2007 Jul 18(3):CD000454. doi: 10.1002/14651858.CD000454.
Research has highlighted the problems for carers of people with dementia. These include the effective loss of companionship and support of a life partner, social isolation and complex financial, legal and social decision making. The burden of caring is financially, emotionally and physically significant. Studies of the effects of ways of supporting carers and reducing the burden of caring often examine a range of outcomes. Probably because of these characteristics, no formal overview of this area of service provision has been undertaken. Moreover, the term 'intervention' in relation to caregivers of people with Alzheimer's disease is open to wide variations in interpretation at the level of service provision. Interventions range from the application of 'hi-tech' computer technology for socially isolated carers, to the formation of specialist support groups and respite services.
The objective of this review is to provide an assessment of the effectiveness of health and/or social interventions designed to help support the carers of people with Alzheimer's-type dementias.
The Cochrane Controlled Trials Register was searched using the terms 'carer*' and 'caregiv*'. See the Cochrane Dementia & Cognitive Impairment group's details for the full search strategy.
All randomised trials in which primary carers of people with Alzheimer's disease are allocated to either intervention or non-intervention/control groups and where the intervention was provided by healthcare and/or social services.
Data was extracted by both reviewers and was found to be unsuitable for quantitative synthesis. A qualitative overview is presented and structured according to the comparisons used in the review. Weighted Mean Differences (weighted by sample size) for each outcome and its subcategories are also presented.
The results of the review are inconclusive. No evidence was found for the following comparison interventions:1) individualised service assessment and planning versus conventional support2) technology-based carer networking (via computers or telephones) versus conventional support3) carer-education/training versus conventional support4) multi-faceted/dimensional strategies (such as specialised carer assessment and training) versus conventional supportWhilst the overview suggests little or no evidence that interventions to support caregivers of people with Alzheimer's disease are of quantifiable benefit, the poor quality and small sample sizes of the studies, as well as the diversity of interventions examined and outcomes reported, mean that this conclusion cannot be put forward without the need for caution, particularly as some of the studies put forward qualitative evidence which contradicts this conclusion.
AUTHORS' CONCLUSIONS: With the limited nature of the research evidence in mind, it is not possible to recommend either wholesale investment in caregiver support programmes or withdrawal of the same. With the addition of further studies in future updates of this review, expected in early 1999, this presently inconclusive picture may become clearer.A number of conclusions relating to future areas of research can be put forward with more conviction. Specifically,1) Future trials need to examine interventions included in the existing knowledge base on Alzheimer's carer-supportive interventions.2) Outcome measures used should mirror those in similar studies.3) Outcome measures need to be clinically and 'lay' relevant.4) Trials need to be of longer duration given the 7-10 years median life expectancy of people with Alzheimer's Disease.5) Sample sizes need to be increased and calculated properly given the likelihood of a moderate intervention effect (if any).7) Blinding at the outcome assessment stage needs to be a part of future basic trial designs if bias is to be avoided.8) If reviews are to have their power increased then quality of reporting results needs to be improved.
研究突出了痴呆症患者照料者面临的问题。这些问题包括有效失去生活伴侣的陪伴与支持、社会孤立以及复杂的财务、法律和社会决策。照料负担在经济、情感和身体方面都很重大。关于支持照料者及减轻照料负担方式效果的研究通常会考察一系列结果。可能由于这些特点,尚未对这一服务提供领域进行正式概述。此外,在服务提供层面,与阿尔茨海默病患者照料者相关的“干预”一词在解释上存在很大差异。干预措施范围从为社会孤立的照料者应用“高科技”计算机技术,到组建专业支持小组和提供喘息服务。
本综述的目的是评估旨在帮助支持阿尔茨海默病型痴呆患者照料者的健康和/或社会干预措施的有效性。
使用“carer*”和“caregiv*”检索词对Cochrane对照试验注册库进行了检索。完整检索策略见Cochrane痴呆与认知障碍小组的详细信息。
所有将阿尔茨海默病患者的主要照料者分配到干预组或非干预/对照组的随机试验,且干预由医疗保健和/或社会服务提供。
两位综述作者提取了数据,发现其不适合进行定量综合分析。现根据综述中使用的比较进行定性概述,并呈现了每个结果及其子类别的加权平均差(按样本量加权)。
综述结果尚无定论。未发现以下比较干预措施的证据:
1)个性化服务评估与规划对比传统支持
2)基于技术的照料者网络(通过计算机或电话)对比传统支持
3)照料者教育/培训对比传统支持
4)多方面/多维策略(如专门的照料者评估和培训)对比传统支持
虽然综述表明几乎没有证据表明支持阿尔茨海默病患者照料者的干预措施具有可量化的益处,但研究质量差、样本量小,以及所考察的干预措施和报告结果的多样性意味着在得出这一结论时需谨慎,特别是因为一些研究提出了与该结论相矛盾的定性证据。
鉴于研究证据有限,无法建议大规模投资照料者支持项目或撤回此类投资。预计在1999年初对本综述进行未来更新时会增加更多研究,目前尚无定论的情况可能会变得更清晰。可以更有把握地提出一些与未来研究领域相关的结论。具体而言:
1)未来试验需要考察现有阿尔茨海默病照料者支持干预知识库中包含的干预措施。
2)所使用的结局指标应与类似研究中的指标一致。
3)结局指标需要在临床和“普通民众”层面具有相关性。
4)鉴于阿尔茨海默病患者的中位预期寿命为7至10年,试验需要持续更长时间。
5)鉴于可能存在适度的干预效果(如果有的话),需要增加样本量并进行适当计算。
7)如果要避免偏倚,结局评估阶段的盲法需要成为未来基础试验设计的一部分。
8)如果要提高综述的效力,那么需要改进结果报告的质量。