Incidence and prevalence of dementia in linked administrative health data in Saskatchewan, Canada: a retrospective cohort study

Kosteniuk, Julie; Morgan, Debra; O’Connell, Megan E; Kirk, Andrew; Crossley, Margaret; Teare, Gary; Stewart, Norma J.; Bello-Haas, Vanina Dal; Forbes, Dorothy; Innes, Anthea; Quail, Jacqueline

doi:10.1186/s12877-015-0075-3

Cited by 32 publications

(27 citation statements)

References 33 publications

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“…Rates of clinically diagnosed dementia are, as expected, lower than rates recorded in field-based studies based on case finding [16–18], because some people with early dementia found in the case finding studies may not have been clinically diagnosed and thus would not have been recorded as having dementia in primary care data. Those diagnosed with dementia in primary care would not necessarily be admitted to hospital, and not all those admitted would have had dementia coded in their hospital records.…”

Section: Discussionsupporting

confidence: 59%

Comparison of dementia recorded in routinely collected hospital admission data in England with dementia recorded in primary care

Brown

Kirichek

Balkwill

et al. 2016

Emerg Themes Epidemiol

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BackgroundElectronic linkage of UK cohorts to routinely collected National Health Service (NHS) records provides virtually complete follow-up for cause-specific hospital admissions and deaths. The reliability of dementia diagnoses recorded in NHS hospital data is not well documented.MethodsFor a sample of Million Women Study participants in England we compared dementia recorded in routinely collected NHS hospital data (Hospital Episode Statistics: HES) with dementia recorded in two separate sources of primary care information: a primary care database [Clinical Practice Research Datalink (CPRD), n = 340] and a survey of study participants’ General Practitioners (GPs, n = 244).ResultsDementia recorded in HES fully agreed both with CPRD and with GP survey data for 85% of women; it did not agree for 1 and 4%, respectively. Agreement was uncertain for the remaining 14 and 11%, respectively; and among those classified as having uncertain agreement in CPRD, non-specific terms compatible with dementia, such as ‘memory loss’, were recorded in the CPRD database for 79% of the women. Agreement was significantly better (p < 0.05 for all comparisons) for women with HES diagnoses for Alzheimer’s disease (95 and 94% agreement with any dementia for CPRD and GP survey, respectively) and for vascular dementia (88 and 88%, respectively) than for women with a record only of dementia not otherwise specified (70 and 72%, respectively). Dementia in the same woman was first mentioned an average 1.6 (SD 2.6) years earlier in primary care (CPRD) than in hospital (HES) data. Age-specific rates for dementia based on the hospital admission data were lower than the rates based on the primary care data, but were similar if the delay in recording in HES was taken into account.ConclusionsDementia recorded in routinely collected NHS hospital admission data for women in England agrees well with primary care records of dementia assessed separately from two different sources, and is sufficiently reliable for epidemiological research.Electronic supplementary materialThe online version of this article (doi:10.1186/s12982-016-0053-z) contains supplementary material, which is available to authorized users.

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Section: Discussionsupporting

confidence: 59%

Comparison of dementia recorded in routinely collected hospital admission data in England with dementia recorded in primary care

Brown

Kirichek

Balkwill

et al. 2016

Emerg Themes Epidemiol

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“…The Sydney Older Persons study provides one relatively recent Australian comparison and similarly shows slightly higher incidence rates to the current study, although it is based on a small sample 27 . The rates observed in the current study are consistent with other studies internationally using administrative data 28 .…”

Section: Discussionsupporting

confidence: 92%

Measuring dementia incidence within a cohort of 267,153 older Australians using routinely collected linked administrative data

Welberry

Brodaty

Hsu

et al. 2020

Sci Rep

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To estimate dementia incidence rates using Australian administrative datasets and compare the characteristics of people identified with dementia across different datasets. This data linkage study used a cohort of 267,153 from the Australian 45 and Up Study. Participants completed a survey in 2006-2009 and subsequent dementia was identified through pharmaceutical claims, hospitalisations, aged care eligibility assessments, care needs at residential aged care entry and death certificates. Agespecific, and age-standardised incidence rates, incidence rate ratios and survival from first dementia diagnosis were estimated. Estimated age-standardised dementia incidence rates using all linked datasets was 16.8 cases per 1000 person years for people aged 65+. Comparing incidence rates to the global published rates suggested 77% of cases were identified but this varied by age with highest coverage among those aged 80-84 years (92%). Incidence rate ratios were inconsistent across datasets for: sex, socioeconomic disadvantage, size of support network, marital status, functional limitations and diabetes. Median survival from first dementia diagnosis ranged from 1.80 years in the care needs dataset to 3.74 years in the pharmaceutical claims dataset. Characteristics of people identified with dementia in different administrative datasets reflect the factors that drive interaction with specific services; this may introduce bias in observational studies using a single data-source to identify dementia. Routinely-collected linked administrative data are increasingly being used to monitor endpoints in observational studies and clinical trials 1. Dementia prevention studies may benefit from this approach due to the long time-frame required to study risk factors in this population 2. Within a research setting, maintaining contact with people in older age groups, particularly as they develop cognitive impairment or dementia is often not viable. Administrative data have the potential to increase power within studies by improving completeness of follow-up, and to reduce bias by avoiding the issue of differential drop-out due to cognitive impairment 3. However, there are also potential limitations to using administrative databases for detecting dementia. Administrative health data are those generated routinely via a person's interaction with the health system. They may include records of hospitalisation, physician visits, entry to long term care or dispensing of pharmaceuticals. They are generally collected with payment rather than research in mind, but there is often a degree of data curation that increases accuracy or adds value such as through coding of diseases and medical conditions. As such, they can be a valuable resource for research 4. When using such data to measure endpoints in trials or cohort studies it is important to consider both whether the cases identified have the disease of interest (usually indicated by high positive predictive value (PPV)) and the proportion of total cases that are detected (sensitivity). A recent syst...

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“…22 This algo rithm identified a new diagnosis of dementia using any of 3 cri teria: from the CIHI Discharge Abstract Database, a relevant International Statistical Classification of Diseases and Related Health Problems, 10th revision code recorded on hospital discharge; from the Ontario Health Insurance Plan, a relevant diagnostic billing code recorded on 3 physician billings separated by 30 days, within a 2year period; or from the Ontario Drug Benefit program, the dispensing of any cholinesterase inhibitor. As a result of known underdiagnosis and documentation of dementia by phys icians 23,24 and moderate sensitivity from the validated algorithm used, 22 we supplemented this definition by including individuals identified as having dementia through assessments for home care (Resident Assessment InstrumentHome Care) and longterm care (Continuing Care Reporting System). 25 We considered the date on which dementia was first documented to be the index date.…”

Section: Dementia Cohort Selectionmentioning

confidence: 99%

Five-year risk of admission to long-term care home and death for older adults given a new diagnosis of dementia: a population-based retrospective cohort study

Huyer

Brown

Spruin

et al. 2020

CMAJ

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BACKGROUND: After diagnosis of a health condition, information about sur vival and potential transition from com munity into institutional care can be helpful for patients and care providers. We sought to describe the association between a new diagnosis of dementia and risk of admission to a longterm care home and death at 5 years. METHODS:We conducted a population based retrospective cohort study using linked health administrative databases. We identified individuals aged 65 years or older, living in the community, with a first documented diagnosis of dementia between Jan. 1, 2010, and Dec. 31, 2012, in Ontario, Canada. Dementia diagnosis was captured using diagnostic codes RESULTS: We identified 108 757 individ uals in our study cohort. By the end of 5 years, 24.4% remained alive in the com munity and 20.5% were living in a long term care home. Of the 55.1% who died, about half (27.9%) were admitted to a longterm care home before death. Three risk factors were associated with increased odds of death: older age (age ≥ 90 yr; odds ratio [OR] 9.5, 95% confidence interval [CI] 8.8-10.2 [reference: age 65-69 yr]), male sex (OR 1.7, 95% CI 1.6-1.7), and the pres ence of organ failure, including chronic obstructive pulmonary disease (OR 1.7, 95% CI 1.7-1.8), congestive heart failure (OR 2.0, 95% CI 1.9-2.0) and renal failure (OR 1.7, 95% CI 1.6-1.8). Groups formed by combinations of these 3 factors had an observed 5year risk of death varying between 22% and 91%.

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Incidence and prevalence of dementia in linked administrative health data in Saskatchewan, Canada: a retrospective cohort study

Cited by 32 publications

References 33 publications

Comparison of dementia recorded in routinely collected hospital admission data in England with dementia recorded in primary care

Comparison of dementia recorded in routinely collected hospital admission data in England with dementia recorded in primary care

Measuring dementia incidence within a cohort of 267,153 older Australians using routinely collected linked administrative data

Five-year risk of admission to long-term care home and death for older adults given a new diagnosis of dementia: a population-based retrospective cohort study

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