Showing papers by "Ashley Akbari published in 2020"

Understanding and responding to COVID-19 in Wales: protocol for a privacy-protecting data platform for enhanced epidemiology and evaluation of interventions.

Abstract: Introduction The emergence of the novel respiratory SARS-CoV-2 and subsequent COVID-19 pandemic have required rapid assimilation of population-level data to understand and control the spread of infection in the general and vulnerable populations. Rapid analyses are needed to inform policy development and target interventions to at-risk groups to prevent serious health outcomes. We aim to provide an accessible research platform to determine demographic, socioeconomic and clinical risk factors for infection, morbidity and mortality of COVID-19, to measure the impact of COVID-19 on healthcare utilisation and long-term health, and to enable the evaluation of natural experiments of policy interventions. Methods and analysis Two privacy-protecting population-level cohorts have been created and derived from multisourced demographic and healthcare data. The C20 cohort consists of 3.2 million people in Wales on the 1 January 2020 with follow-up until 31 May 2020. The complete cohort dataset will be updated monthly with some individual datasets available daily. The C16 cohort consists of 3 million people in Wales on the 1 January 2016 with follow-up to 31 December 2019. C16 is designed as a counterfactual cohort to provide contextual comparative population data on disease, health service utilisation and mortality. Study outcomes will: (a) characterise the epidemiology of COVID-19, (b) assess socioeconomic and demographic influences on infection and outcomes, (c) measure the impact of COVID-19 on short -term and longer-term population outcomes and (d) undertake studies on the transmission and spatial spread of infection. Ethics and dissemination The Secure Anonymised Information Linkage-independent Information Governance Review Panel has approved this study. The study findings will be presented to policy groups, public meetings, national and international conferences, and published in peer-reviewed journals.

Data Resource: population level family justice administrative data with opportunities for data linkage

Abstract: Introduction Better use of administrative data is essential to enhance understanding about the family justice system, and characteristics and outcomes for children and families. The Nuffield Family Justice Observatory Data Partnership supports this aim through analyses of core family justice datasets. When a child is involved in family court proceedings in Wales, Cafcass Cymru are employed to represent a child’s best interests. This paper provides an overview of the Cafcass Cymru data, and linkage to population level health and other administrative datasets held within the Secure Anonymised Information Linkage (SAIL) Databank. Two data linkage example analyses are described. Further research opportunities are outlined. Methods Cafcass Cymru data was transferred to SAIL using a standardised approach to provide de-identified data with Anonymised Linking Fields (ALF) for successfully matched records. Three cohorts were created: all individuals involved in family court applications; all individuals with an ALF allowing subsequent health data linkage; and all individuals with a Residential Anonymised Linking Field (RALF) and Lower Super Output Area (LSOA) enabling area level deprivation analysis. Results Cafcass Cymru data are available containing 12,745 public law applications between 2011 and 2019, with 52,023 applications from 2005 to 2019 for private law. The overall match rate was 80%, with variations observed by time, law type, roles, gender and age. Forty per cent had hospital inpatient admissions 2 years prior or after application receipt at Cafcass Cymru, of which 27% were for emergency admissions; 54% had an emergency department attendance and 61% an outpatient appointment during the same period. Individuals involved in public or private law applications were more likely to reside in deprived areas. Conclusion The Nuffield Family Justice Observatory Data Partnership will enhance research opportunities to better understand the family justice system and outcomes for children and families. Population level Cafcass Cymru data can be accessed through the SAIL Databank. Forthcoming data acquisition will also facilitate further analyses and insight.

The association of smoking and socioeconomic status on cutaneous melanoma: a population-based, data-linkage, case-control study.

Abstract: Background Previous studies have identified an inverse association between melanoma and smoking; however, data from population-based studies are scarce. Objectives To determine the association between smoking and socioeconomic (SES) on the risk of development of melanoma. Furthermore, we sought to determine the implications of smoking and SES on survival. Methods We conducted a population-based case-control study. Cases were identified from the Welsh Cancer Intelligence and Surveillance Unit (WCISU) during 2000-2015 and controls from the general population. Smoking and SES were obtained from data linkage with other national databases. The association of smoking status and SES on the incidence of melanoma were assessed using binary logistic regression. Multivariate survival analysis was performed on a melanoma cohort using a Cox proportional hazard model using survival as the outcome. Results During 2000-2015, 9636 patients developed melanoma. Smoking data were obtained for 7124 (73·9%) of these patients. There were 26 408 controls identified from the general population. Smoking was inversely associated with melanoma incidence [odds ratio (OR) 0·70, 95% confidence interval (CI) 0·65-0·76]. Smoking was associated with an increased overall mortality [hazard ratio (HR) 1·30, 95% CI 1·09-1·55], but not associated with melanoma-specific mortality. Patients with higher SES had an increased association with melanoma incidence (OR 1·58, 95% CI 1·44-1·73). Higher SES was associated with an increased chance of both overall (HR 0·67, 95% CI 0·56-0·81) and disease-specific survival (HR 0·69, 95% CI 0·53-0·90). Conclusions Our study has demonstrated that smoking appeared to be associated with reduced incidence of melanoma. Although smoking increases overall mortality, no association was observed with melanoma-specific mortality. Further work is required to determine if there is a biological mechanism underlying this relationship or an alternative explanation, such as survival bias. What's already known about this topic? Previous studies have been contradictory with both negative and positive associations between smoking and the incidence of melanoma reported. Previous studies have either been limited by publication bias because of selective reporting or underpowered. What does this study add? Our large study identified an inverse association between smoking status and melanoma incidence. Although smoking status was negatively associated with overall disease survival, no significant association was noted in melanoma-specific survival. Socioeconomic status remains closely associated with melanoma. Although higher socioeconomic populations are more likely to develop the disease, patients with lower socioeconomic status continue to have a worse prognosis.

Identifying children with Cystic Fibrosis in population-scale routinely collected data in Wales: A Retrospective Review

Abstract: Introduction The challenges in identifying a cohort of people with a rare condition can be addressed by routinely collected, population-scale electronic health record (EHR) data, which provide large volumes of data at a national level. This paper describes the challenges of accurately identifying a cohort of children with Cystic Fibrosis (CF) using EHR and their validation against the UK CF Registry. Objectives To establish a proof of principle and provide insight into the merits of linked data in CF research; to identify the benefits of access to multiple data sources, in particular the UK CF Registry data, and to demonstrate the opportunity it represents as a resource for future CF research. Methods Three EHR data sources were used to identify children with CF born in Wales between 1st January 1998 and 31st August 2015 within the Secure Anonymised Information Linkage (SAIL) Databank. The UK CF Registry was later acquired by SAIL and linked to the EHR cohort to validate the cases and explore the reasons for misclassifications. Results We identified 352 children with CF in the three EHR data sources. This was greater than expected based on historical incidence rates in Wales. Subsequent validation using the UK CF Registry found that 257 (73%) of these were true cases. Approximately 98.7% (156/158) of individuals identified as CF cases in all three EHR data sources were confirmed as true cases; but this was only the case for 19.8% (20/101) of all those identified in just a single data source. Conclusion Identifying health conditions in EHR data can be challenging, so data quality assurance and validation is important or the merit of the research is undermined. This retrospective review identifies some of the challenges in identifying CF cases and demonstrates the benefits of linking cases across multiple data sources to improve quality.

The Impact of COVID-19 on Adjusted Mortality Risk in Care Homes for Older Adults in Wales, United Kingdom: A Retrospective Population-Based Cohort Study for Mortality in 2016-2020

Abstract: Background: Mortality in care homes has had a prominent focus during the COVID-19 outbreak. Multiple and interconnected challenges face the care home sector in the prevention and management of outbreaks of COVID-19, including adequate supply of personal protective equipment, staff shortages, and insufficient or lack of timely COVID-19 testing. Care homes are particularly vulnerable to infectious diseases. Methods: We analysed the mortality of older care home residents in Wales during COVID-19 lockdown and compared this across the population of Wales and the previous 4-years. We used the SAIL Databank to anonymously link data for Welsh residents to mortality data up to the 14 th June 2020. We calculated survival curves and adjusted Cox proportional hazards models to estimate hazard ratios (HRs) for the risk of mortality. We adjusted hazard ratios for age, gender, social economic status and prior health conditions. Results: Survival curves show an increased proportion of deaths between 23rd March and 14th June 2020 in care homes for older people, with an adjusted HR of 1·72 (1·55, 1·90) compared to 2016. Compared to the general population in 2016-2019, adjusted care home mortality HRs for older adults rose from 2·15 (2·11,2·20) in 2016-2019 to 2·94 (2·81,3·08) in 2020. Interpretation: The survival curves and increased HRs show a significantly increased risk of death in the 2020 study periods. Funding Statement: This work was supported by Health and Care research Wales [Project: SCF-18-1504], Health Data Research UK [NIWA1] and Administrative Data Research UK [grant ES/S007393/1]. Declaration of Interests: None to declare. Ethics Approval Statement: This study has been approved by the IGRP as project 0911.

Do home modifications reduce care home admissions for older people? A matched control evaluation of the Care & Repair Cymru service in Wales.

Abstract: Background home advice and modification interventions aim to promote independent living for those living in the community, but quantitative evidence of their effectiveness is limited. Aim assess the risk of care home admissions for people with different frailty levels receiving home advice and modification interventions against a control group who do not. Study design and setting matched control evaluation using linked longitudinal data from the Secure Anonymised Information Linkage (SAIL) Databank, comprising people aged 60-95, registered with a SAIL contributing general practice. The intervention group received the Care & Repair Cymru (C & RC) service, a home advice and modification service available to residents in Wales. Methods frailty, age and gender were used in propensity score matching to assess the Hazard Ratio (HR) of care home admissions within a 1-, 3- and 5-year period for the intervention group (N = 93,863) compared to a matched control group (N = 93,863). Kaplan-Meier curves were used to investigate time to a care home admission. Results the intervention group had an increased risk of a care home admission at 1-, 3- and 5-years [HR (95%CI)] for those classified as fit [1-year: 2.02 (1.73, 2.36), 3-years: 1.87 (1.72, 2.04), 5-years: 1.99 (1.86, 2.13)] and mildly frail [1-year: 1.25 (1.09, 1.42), 3-years: 1.25 (1.17, 1.34), 5-years: 1.30 (1.23, 1.38)], but a reduced risk of care home admission for moderately [1-year: 0.66 (0.58, 0.75), 3-years: 0.75 (0.70, 0.80), 5-years: 0.83 (0.78, 0.88)] and severely frail individuals [1-year: 0.44 (0.37, 0.54), 3-years: 0.54 (0.49, 0.60), 5-years: 0.60(0.55, 0.66)]. Conclusions HRs indicated that the C & RC service helped to prevent care home admissions for moderately and severely frail individuals. The HRs generally increased with follow-up duration.

Behavioural difficulties in early childhood and risk of adolescent injury.

Abstract: Objective To evaluate long-term associations between early childhood hyperactivity and conduct problems (CP), measured using Strengths and Difficulties Questionnaire (SDQ) and risk of injury in early adolescence. Design Data linkage between a longitudinal birth cohort and routinely collected electronic health records. Setting Consenting Millennium Cohort Study (MCS) participants residing in Wales and Scotland. Patients 3119 children who participated in the age 5 MCS interview. Main outcome measures Children with parent-reported SDQ scores were linked with hospital admission and Accident & Emergency (A&E) department records for injuries between ages 9 and 14 years. Negative binomial regression models adjusting for number of people in the household, lone parent, residential area, household poverty, maternal age and academic qualification, child sex, physical activity level and country of interview were fitted in the models. Results 46% of children attended A&E or were admitted to hospital for injury, and 11% had high/abnormal scores for hyperactivity and CP. High/abnormal or borderline hyperactivity were not significantly associated with risk of injury, incidence rate ratio (IRR) with 95% CI of the high/abnormal and borderline were 0.92 (95% CI 0.74 to 1.14) and 1.16 (95% CI 0.88 to 1.52), respectively. Children with borderline CP had higher injury rates compared with those without CP (IRR 1.31, 95% CI 1.09 to 1.57). Conclusions Children with high/abnormal hyperactivity or CP scores were not at increased risk of injury; however, those with borderline CP had higher injury rates. Further research is needed to understand if those with difficulties receive treatment and support, which may reduce the likelihood of injuries.

Green-Blue Spaces and Mental Health: A Longitudinal Data Linkage Study

Abstract: IntroductionA growing evidence base indicates health benefits are associated with access to green-blue spaces (GBS), such as beaches and parks. However, few studies have examined associations with changes in access to GBS over time. Objectives and ApproachWe have linked cross-sector data collected within Wales, United Kingdom, quarterly from 2008 to 2019, to examine the impact of GBS access on individual-level well-being and common mental health disorders (CMD). We created a longitudinal dataset of GBS access metrics, derived from satellite and administrative data sources, for 1.4 million homes in Wales. These household-level metrics were linked to individuals using the Welsh Demographic Service Dataset within the Secure Anonymised Information Linkage (SAIL) Databank. Linkage to Welsh Longitudinal General Practice data within SAIL enabled us to identify individual-level CMD over time. We also linked individual-level self-reported GBS use and well-being data from the National Survey for Wales (NSW) to routine data for cross-sectional survey participants. ResultsWe created a longitudinal cohort panel capturing all 2.84 million adults aged 16+ living in Wales between 2008 and 2019 and with a general practitioner (GP) registration. Individual-level health data and household-level environmental metrics were linked for each quarter an individual is in the study. Household addresses were linked to 97% of the cohort, creating 110+ million rows of anonymously linked cross-sector data. The cohort provides an average follow-up period of 8 years, during which 565,168 (20%) adults received at least one CMD diagnosis or symptom. Conclusion / ImplicationsThis example of multi-sectoral data linkage across multiple environmental and administrative data sources has created a rich data source, which we will use toquantify the impact of changes in GBS access on individual–level CMD and well-being. This evidence will inform policy in the areas of health, planning and the environment.

The Impact of COVID-19 on Adjusted Mortality Risk in Care Homes for Older Adults in Wales, United Kingdom: A retrospective population-based cohort study for mortality in 2016-2020

Abstract: Background: Mortality in care homes has had a prominent focus during the COVID-19 outbreak Multiple and interconnected challenges face the care home sector in the prevention and management of outbreaks of COVID-19, including adequate supply of personal protective equipment, staff shortages, and insufficient or lack of timely COVID-19 testing Care homes are particularly vulnerable to infectious diseases Aim: To analyse the mortality of older care home residents in Wales during COVID-19 lockdown and compare this across the population of Wales and the previous 4-years Study Design and Setting: We used anonymised Electronic Health Records (EHRs) and administrative data from the Secure Anonymised Information Linkage (SAIL) Databank to create a cross-sectional cohort study We anonymously linked data for Welsh residents to mortality data up to the 14th June 2020 Methods: We calculated survival curves and adjusted Cox proportional hazards models to estimate hazard ratios (HRs) for the risk of mortality We adjusted hazard ratios for age, gender, social economic status and prior health conditions Results: Survival curves show an increased proportion of deaths between 23rd March and 14th June 2020 in care homes for older people, with an adjusted HR of 172 (155, 190) compared to 2016 Compared to the general population in 2016-2019, adjusted care home mortality HRs for older adults rose from 215 (211,220) in 2016-2019 to 294 (281,308) in 2020 Conclusions: The survival curves and increased HRs show a significantly increased risk of death in the 2020 study periods

How effective are population health surveys for estimating prevalence of chronic conditions compared to anonymised clinical data

Abstract: IntroductionPopulation health surveys are used to record person-reported outcome measures for chronic health conditions and provide a useful source of data when evaluating potential disease burdens. The reliability of survey-based prevalence estimates for chronic diseases is unclear nonetheless. This study applied methodological triangulation via a data linkage method to validate prevalence of selected chronic conditions (angina, myocardial infarction, heart failure, and asthma). MethodsLinked healthcare records were used for a combined cohort of 11,323 adults from the 2013 and 2014 sweeps of the Welsh Health Survey (WHS). The approach utilised consented survey data linked to primary and secondary care electronic health record (EHR) data back to 2002 within the Secure Anonymised Information Linkage (SAIL) Databank. ResultsThis descriptive study demonstrates validation of survey and clinical data using data linkage for selected chronic cardiovascular conditions and asthma with varied success. The results indicate that identifying cases for separate cardiovascular conditions was limited without specific medication codes for each condition, but more straightforward for asthma, where there was an extensive list of medications available. For asthma there was better agreement between prevalence estimates based on survey and clinical data as a result. ConclusionWhilst the results provide external validity for the WHS as an instrument for estimating the burden of chronic disease, they also indicate that a data linkage appproach can be used to produce comparable prevalence estimates using clinical data if a defined condition-specific set of clinical codes are available.

The Value of Routinely Collected Data in Evaluating Home Assessment and Modification Interventions to Prevent Falls in Older People: Systematic Literature Review.

Abstract: Background: Falls in older people commonly occur at home. Home assessment and modification (HAM) interventions can be effective in reducing falls; however, there are some concerns over the validity of evaluation findings. Routinely collected data could improve the quality of HAM evaluations and strengthen their evidence base. Objective: The aim of this study is to conduct a systematic review of the evidence of the use of routinely collected data in the evaluations of HAM interventions. Methods: We searched the following databases from inception until January 31, 2020: PubMed, Ovid, CINAHL, OpenGrey, CENTRAL, LILACS, and Web of Knowledge. Eligible studies were those evaluating HAMs designed to reduce falls involving participants aged 60 years or more. We included study protocols and full reports. Bias was assessed using the Risk Of Bias In Non-Randomized Studies of Interventions (ROBINS-I) tool. Results: A total of 7 eligible studies were identified in 8 papers. Government organizations provided the majority of data across studies, with health care providers and third-sector organizations also providing data. Studies used a range of demographic, clinical and health, and administrative data. The purpose of using routinely collected data spanned recruiting and creating a sample, stratification, generating independent variables or covariates, and measuring key study-related outcomes. Nonhome-based modification interventions (eg, in nursing homes) using routinely collected data were not included in this study. We included two protocols, which meant that the results of those studies were not available. MeSH headings were excluded from the PubMed search because of a reduction in specificity. This means that some studies that met the inclusion criteria may not have been identified. Conclusions: Routine data can be used successfully in many aspects of HAM evaluations and can reduce biases and improve other important design considerations. However, the use of these data in these studies is currently not widespread. There are a number of governance barriers to be overcome to allow these types of linkage and to ensure that the use of routinely collected data in evaluations of HAM interventions is exploited to its full potential.