Dataset Information

The diagnosis, burden and prognosis of dementia: A record-linkage cohort study in England.

ABSTRACT: OBJECTIVES:Electronic health records (EHR) might be a useful resource to study the risk factors and clinical care of people with dementia. We sought to determine the diagnostic validity of dementia captured in linked EHR. METHODS AND FINDINGS:A cohort of adults in linked primary care, hospital, disease registry and mortality records in England, [CALIBER (CArdiovascular disease research using LInked Bespoke studies and Electronic health Records)]. The proportion of individuals with dementia, Alzheimer's disease, vascular and rare dementia in each data source was determined. A comparison was made of symptoms and care between people with dementia and age-, sex- and general practice-matched controls, using conditional logistic regression. The lifetime risk and prevalence of dementia and mortality rates in people with and without dementia were estimated with random-effects Poisson models. There were 47,386 people with dementia: 12,633 with Alzheimer's disease, 9540 with vascular and 1539 with rare dementia. Seventy-four percent of cases had corroborating evidence of dementia. People with dementia were more likely to live in a deprived area (conditional OR 1.26;95%CI:1.20-1.31 most vs least deprived), have documented memory impairment (cOR = 11.97;95%CI:11.24-12.75), falls (cOR = 2.36;95%CI:2.31-2.41), depression (cOR = 2.03; 95%CI:1.98-2.09) or anxiety (cOR = 1.27; 95%CI:1.23-1.32). The lifetime risk of dementia at age 65 was 9.2% (95%CI:9.0%-9.4%), in men and 14.9% (95%CI:14.7%-15.1%) in women. The population prevalence of recorded dementia increased from 0.3% in 2000 to 0.7% in 2010. A higher mortality rate was observed in people with than without dementia (IRR = 1.56;95%CI:1.54-1.58). CONCLUSIONS:Most people with a record of dementia in linked UK EHR had some corroborating evidence for diagnosis. The estimated 10-year risk of dementia was higher than published population-based estimations. EHR are therefore a promising source of data for dementia research.

SUBMITTER: Pujades-Rodriguez M

PROVIDER: S-EPMC6019102 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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The diagnosis, burden and prognosis of dementia: A record-linkage cohort study in England.

Pujades-Rodriguez Mar M Assi Valentina V Gonzalez-Izquierdo Arturo A Wilkinson Tim T Schnier Christian C Sudlow Cathie C Hemingway Harry H Whiteley William N WN

PloS one 20180626 6

<h4>Objectives</h4>Electronic health records (EHR) might be a useful resource to study the risk factors and clinical care of people with dementia. We sought to determine the diagnostic validity of dementia captured in linked EHR.<h4>Methods and findings</h4>A cohort of adults in linked primary care, hospital, disease registry and mortality records in England, [CALIBER (CArdiovascular disease research using LInked Bespoke studies and Electronic health Records)]. The proportion of individuals with ...[more]

PMID: 29944675

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Project description:BackgroundIndividuals from minority ethnic groups in the UK are thought to be at higher risk of developing dementia while facing additional barriers to receiving timely care. However, few studies in the UK have examined if there are ethnic disparities in survival once individuals receive a dementia diagnosis.MethodsWe conducted a retrospective cohort study using electronic health record data of individuals diagnosed with dementia from a large secondary mental healthcare provider in London. Patients from Black African, Black Caribbean, South Asian, White British, and White Irish ethnic backgrounds were followed up for a 10-year period between 01 January 2008 and 31 December 2017. Data were linked to death certificate data from the Office of National Statistics to determine survival from dementia diagnosis. Standardised mortality ratios were calculated to estimate excess deaths in each ethnicity group as compared to the gender- and age-standardised population of England and Wales. We used Cox regression models to compare survival after dementia diagnosis across each ethnicity group.ResultsMortality was elevated at least twofold across all ethnicity groups with dementia compared to the general population in England and Wales. Risk of death was lower in Black Caribbean, Black African, White Irish, and South Asian groups as compared to the White British population, even after adjusting for age, gender, neighbourhood-level deprivation, indicators of mental and physical comorbidities. Risk of death remained lower after additionally accounting for those who emigrated out of the cohort.ConclusionsWhile mortality in dementia is elevated across all ethnic groups as compared to the general population, reasons for longer survival in minority ethnic groups in the UK as compared to the White British group are unclear and merit further exploration. Implications of longer survival, including carer burden and costs, should be considered in policy and planning to ensure adequate support for families and carers of individuals with dementia.

Project description:ObjectiveTo examine the association between gestational age at birth and hospital admissions to age 10 years and how admission rates change throughout childhood.DesignPopulation based, record linkage, cohort study in England.SettingNHS hospitals in England, United Kingdom.Participants1 018 136 live, singleton births in NHS hospitals in England between January 2005 and December 2006.Main outcome measuresPrimary outcome was all inpatient hospital admissions from birth to age 10, death, or study end (March 2015); secondary outcome was the main cause of admission, which was defined as the World Health Organization's first international classification of diseases, version 10 (ICD-10) code within each hospital admission record.Results1 315 338 admissions occurred between 1 January 2005 and 31 March 2015, and 831 729 (63%) were emergency admissions. 525 039 (52%) of 1 018 136 children were admitted to hospital at least once during the study period. Hospital admissions during childhood were strongly associated with gestational age at birth (<28, 28-29, 30-31, 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, and 42 weeks). In comparison with children born at full term (40 weeks' gestation), those born extremely preterm (<28 weeks) had the highest rate of hospital admission throughout childhood (adjusted rate ratio 4.92, 95% confidence interval 4.58 to 5.30). Even children born at 38 weeks had a higher rate of hospital admission throughout childhood (1.19, 1.16 to 1.22). The association between gestational age and hospital admission decreased with increasing age (interaction P<0.001). Children born earlier than 28 weeks had an adjusted rate ratio of 6.34 (95% confidence interval 5.80 to 6.85) at age less than 1 year, declining to 3.28 (2.82 to 3.82) at ages 7-10, in comparison with those born full term; whereas in children born at 38 weeks, the adjusted rate ratios were 1.29 (1.27 to 1.31) and 1.16 (1.13 to 1.19), during infancy and ages 7-10, respectively. Infection was the main cause of excess hospital admissions at all ages, but particularly during infancy. Respiratory and gastrointestinal conditions also accounted for a large proportion of admissions during the first two years of life.ConclusionsThe association between gestational age and hospital admission rates decreased with age, but an excess risk remained throughout childhood, even among children born at 38 and 39 weeks of gestation. Strategies aimed at the prevention and management of childhood infections should target children born preterm and those born a few weeks early.

Project description:ObjectivesDespite established standards and guidelines, substantial variation remains in the delivery of hip fracture care across the United Kingdom. We aimed to determine which hospital-level organisational factors predict adverse patient outcomes in the months following hip fracture.MethodsWe examined a national record-linkage cohort of 178,757 patients aged ≥60 years who sustained a hip fracture in England and Wales in 2016-19. Patient-level hospital admissions datasets, National Hip Fracture Database and mortality data were linked to metrics from 18 hospital-level organisational-level audits and reports. Multilevel models identified organisational factors, independent of patient case-mix, associated with three patient outcomes: length of hospital stay (LOS), 30-day all-cause mortality and emergency 30-day readmission.ResultsAcross hospitals mean LOS ranged from 12 to 41.9 days, mean 30-day mortality from 3.7 to 10.4% and mean readmission rates from 3.7 to 30.3%, overall means were 21.4 days, 7.3% and 15.3%, respectively. In all, 22 organisational factors were independently associated with LOS; e.g. a hospital's ability to mobilise >90% of patients promptly after surgery predicted a 2-day shorter LOS (95% confidence interval [CI]: 1.2-2.6). Ten organisational factors were independently associated with 30-day mortality; e.g. discussion of patient experience feedback at clinical governance meetings and provision of prompt surgery to >80% of patients were each associated with 10% lower mortality (95%CI: 5-15%). Nine organisational factors were independently associated with readmissions; e.g. readmissions were 17% lower if hospitals reported how soon community therapy would start after discharge (95%CI: 9-24%).ConclusionsReceipt of hip fracture care should be reliable and equitable across the country. We have identified multiple, potentially modifiable, organisational factors associated with important patient outcomes following hip fracture.

Project description:ObjectivesTo examine 10-year mortality and hospital use among individuals categorised as resilient and vulnerable to the impact of chronic pain.DesignA cohort record linkage study.SettingGrampian, Scotland.Participants5858 individuals from the Grampian Pain Cohort, established in 1996, were linked, by probability matching, with national routinely collected datasets.Main outcome measuresHRs for subsequent 10-year mortality and ORs/incidence rate ratios for subsequent 10-year hospital use, each with adjustment for potential confounding variables.Results36.5% of those with high pain intensity reported a low pain-related disability (categorised resilient) and 7.1% of those reporting low pain intensity reported a high pain-related disability (categorised vulnerable). Sex, age, housing, employment and long-term limiting illness were independently associated with being vulnerable or resilient. After adjustment for these variables, individuals in the resilient group were 25% less likely to die within 10 years of the survey compared with non-resilient individuals: HR 0.75, 95% CI 0.62 to 0.91 and vulnerable individuals were 45% more likely to die than non-vulnerable individuals: HR 1.45, 95% CI 1.01 to 2.11. Resilient individuals were less likely to have had an outpatient or day-case visit for anaesthetics: OR 0.46, 95% CI 0.27 to 0.79, but no other clinical specialities. Vulnerable individuals were significantly less likely to have had any outpatient or day-case visit (OR 0.43, 0.25 to 0.75); but more likely to have had a psychiatric visit (OR 1.96, 1.06 to 3.61). No significant differences in likelihood of any inpatient visits were found.ConclusionsResilient individuals have a better 10-year survival than non-resilient individuals indicating that resilience is a phenomenon worth researching. Further research is needed to explore who is likely to become resilient, why and how, as well as to tease out the internal and external factors that influence resilience.

Dataset Information

The diagnosis, burden and prognosis of dementia: A record-linkage cohort study in England.

Publications

The diagnosis, burden and prognosis of dementia: A record-linkage cohort study in England.

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