Alzheimer Scotland Dementia Research Centre, The University of Edinburgh, 7 George Square, Edinburgh, EH8 9JZ, UK.
Centre for Cognitive Ageing and Cognitive Epidemiology, The University of Edinburgh, Edinburgh, UK.
BMC Psychiatry. 2017 Jul 3;17(1):239. doi: 10.1186/s12888-017-1401-4.
Studies investigating the risk factors for or causation of dementia must consider subjects prior to disease onset. To overcome the limitations of prospective studies and self-reported recall of information, the use of existing data is key. This review provides a narrative account of dementia ascertainment methods using sources of existing data.
The literature search was performed using: MEDLINE, EMBASE, PsychInfo and Web of Science. Included articles reported a UK-based study of dementia in which cases were ascertained using existing data. Existing data included that which was routinely collected and that which was collected for previous research. After removing duplicates, abstracts were screened and the remaining articles were included for full-text review. A quality tool was used to evaluate the description of the ascertainment methodology.
Of the 3545 abstracts screened, 360 articles were selected for full-text review. 47 articles were included for final consideration. Data sources for ascertainment included: death records, national datasets, research databases and hospital records among others. 36 articles used existing data alone for ascertainment, of which 27 used only a single data source. The most frequently used source was a research database. Quality scores ranged from 7/16 to 16/16. Quality scores were better for articles with dementia ascertainment as an outcome. Some papers performed validation studies of dementia ascertainment and most indicated that observed rates of dementia were lower than expected.
We identified a lack of consistency in dementia ascertainment methodology using existing data. With no data source identified as a "gold-standard", we suggest the use of multiple sources. Where possible, studies should access records with evidence to confirm the diagnosis. Studies should also calculate the dementia ascertainment rate for the population being studied to enable a comparison with an expected rate.
研究痴呆症的风险因素或病因必须考虑发病前的受试者。为了克服前瞻性研究和自我报告信息回忆的局限性，利用现有数据是关键。本综述提供了使用现有数据源确定痴呆症的叙述性说明。
使用 MEDLINE、EMBASE、PsychInfo 和 Web of Science 进行文献检索。纳入的文章报告了一项基于英国的痴呆症研究，该研究使用现有数据确定病例。现有数据包括常规收集的数据和为以前的研究收集的数据。在去除重复项后，对摘要进行筛选，然后将其余文章纳入全文审查。使用质量工具评估确定方法的描述。
在筛选的 3545 篇摘要中，有 360 篇文章被选为全文审查。有 47 篇文章被纳入最终考虑。确定的数据源包括：死亡记录、国家数据集、研究数据库和医院记录等。36 篇文章仅使用现有数据进行确定，其中 27 篇文章仅使用单一数据源。最常用的来源是研究数据库。质量评分范围为 7/16 至 16/16。痴呆症确定作为结果的文章的质量评分更高。一些论文对痴呆症确定进行了验证研究，大多数论文表明观察到的痴呆症发生率低于预期。
我们发现使用现有数据确定痴呆症的方法缺乏一致性。由于没有确定任何数据源作为“金标准”，我们建议使用多个数据源。在可能的情况下，研究应访问具有确认诊断证据的记录。研究还应计算研究人群的痴呆症确定率，以便与预期率进行比较。
