Dementia Phenotypes in Primary Care, Hospital, and National Mortality Registries
Dementia Phenotypes in Primary Care, Hospital, and National Mortality Registries: a Cohort Study in Linked Electronic Health Records
Most patients with dementia in the UK use their local hospitals and general (family) practices throughout their illness. Linked electronic health records from primary care, hospital and death certificates records therefore provide useful information about the diagnosis and prognosis of patients who develop dementia.
In this study we will assess the validity of dementia diagnoses in linked primary care, hospital and death records, by examining the timing of important health transitions in patients with recorded dementia, and we will estimate the lifetime risk of recorded dementia in different age and sex groups
研究概览
详细说明
Dementia is a clinical syndrome with insidious onset that is difficult to diagnose in its earliest stages. Presentation to healthcare depends not only upon the rates of disease progression, but also on social support, recognition by clinicians, and patients' and carers' fear of diagnosis. Maintaining complete follow up in cohorts of patient with dementia is difficult, because patients with dementia are frequently lost to follow up.
Most patients with dementia in the UK use their local hospitals and general (family) practices throughout their illness. Linked electronic health records from primary care, hospital and death certificates records should therefore provide useful information about the diagnosis and prognosis of patients who develop dementia with minimal loss to follow-up rates and improved completeness of diagnosis.
Demonstrating that patients with recorded dementia have an earlier onset of typical symptoms, functional impairment and death than patients in the general population would support the veracity of diagnosed dementia recorded in electronic health records and its use as an outcome or exposure in cohort studies and for evaluating policy. Previous studies have found that dementia is poorly recorded in routine clinical practice in comparison to face-to-face studies, although this varies by setting and region. However, ascertainment may be improved by examining linked, longitudinal resources. Comparing the lifetime risk of dementia calculated from linked electronic health records with lifetime risks from other sources will also be a useful information to support the use of linked electronic health records in dementia research.
Electronic health records contain information on important health transitions in patients with dementia: from the earliest stage of the illness (depression, anxiety, memory complaints); the development of cognitive impairment that manifest as loss of capacity or missed appointments; and significant functional impairment, with admission to nursing homes or hospital admission. In this study, we will assess the validity of dementia diagnoses in linked primary care, hospital and death records, by examining the timing of important health transitions in patients with recorded dementia, and estimate the lifetime risk of recorded dementia in different age and sex groups.
研究类型
注册 (预期的)
联系人和位置
学习地点
-
-
-
London、英国
- London Farr Institute of Health Informatics
-
-
参与标准
资格标准
适合学习的年龄
接受健康志愿者
有资格学习的性别
取样方法
研究人群
描述
Inclusion Criteria:
- Patients aged 18 years and over
- Registered with a participating general practice during the study period
- Minimum one year of records prior to study entry meeting CPRD data quality criteria
- Followed on or after 1 January 1997
Exclusion Criteria:
- Patients without recorded gender
- Less than 1 year of follow-up between study entry and date of administrative censoring
学习计划
研究是如何设计的?
设计细节
队列和干预
团体/队列 |
干预/治疗 |
---|---|
Dementia
Patients with a recorded diagnosis of dementia in primary or secondary care
|
This study is based on the retrospective analysis of linked electronic health records.
|
Non-dementia
Patients without a recorded diagnosis of dementia in primary or secondary care
|
This study is based on the retrospective analysis of linked electronic health records.
|
研究衡量的是什么?
主要结果指标
结果测量 |
措施说明 |
大体时间 |
---|---|---|
Proportion of patients with dementia diagnosis (any type) in primary care that also are recorded in secondary care
大体时间:10 years
|
10 years
|
|
Factors associated with dementia diagnosis (any type) recording in mortality data only
大体时间:10 years
|
These will be estimated from multivariable logistic regression models
|
10 years
|
Symptoms associated with subsequent diagnosis of dementia
大体时间:10 years
|
These will be estimated from multivariable logistic regression models
|
10 years
|
Lifetime risk of dementia (any type)
大体时间:10 years
|
10 years
|
|
Lifetime risk of mortality associated with dementia (any time)
大体时间:10 years
|
10 years
|
|
Factors associated with dementia diagnosis (any type) recording in secondary care only
大体时间:10 years
|
These will be estimated from multivariable logistic regression models
|
10 years
|
Factors associated with dementia diagnosis (any type) recording in primary care only
大体时间:10 years
|
These will be estimated from multivariable logistic regression models
|
10 years
|
Proportion of patients with dementia diagnosis (any type) in primary care that also are recorded in mortality data
大体时间:10 years
|
10 years
|
|
Proportion of patients with dementia diagnosis (any type) in secondary care that also are recorded in mortality data
大体时间:10 years
|
10 years
|
次要结果测量
结果测量 |
大体时间 |
---|---|
Proportion of patients with Alzheimer's disease in primary care that are also diagnosed in secondary care
大体时间:10 years
|
10 years
|
Proportion of patients with vascular dementia in primary care that are also diagnosed in secondary care
大体时间:10 years
|
10 years
|
Lifetime risk of Alzheimer's disease
大体时间:10 years
|
10 years
|
Lifetime risk of vascular dementia
大体时间:10 years
|
10 years
|
Lifetime risk of mortality associated with Alzheimer's disease
大体时间:10 years
|
10 years
|
Proportion of patients with Alzheimer's disease in primary care that are also diagnosed in mortality data
大体时间:10 years
|
10 years
|
Proportion of patients with Alzheimer's disease in secondary care that are also recorded in mortality data
大体时间:10 years
|
10 years
|
Proportion of patients with vascular dementia in primary care that are also recorded in secondary care
大体时间:10 years
|
10 years
|
Proportion of patients with vascular dementia in secondary care that are also recorded in mortality data
大体时间:10 years
|
10 years
|
合作者和调查者
研究记录日期
研究主要日期
学习开始
初级完成 (预期的)
研究完成 (预期的)
研究注册日期
首次提交
首先提交符合 QC 标准的
首次发布 (估计)
研究记录更新
最后更新发布 (估计)
上次提交的符合 QC 标准的更新
最后验证
更多信息
此信息直接从 clinicaltrials.gov 网站检索,没有任何更改。如果您有任何更改、删除或更新研究详细信息的请求,请联系 register@clinicaltrials.gov. clinicaltrials.gov 上实施更改,我们的网站上也会自动更新.