International Journal of Population Data Science最新文献

Background: Children with major congenital anomalies (MCAs) disproportionately experience complex health problems requiring additional health and educational support.

Objectives: To describe survival to the start of school and recorded special educational needs (SEN) provision among children with and without administrative record-identified MCAs in England. We present results for 12 system-specific MCA subgroups and 25 conditions. We also describe the change of prevalence in recorded SEN provision before and after SEN reforms in 2014, which were implemented to improve and streamline SEN provision.

Methods: We created a birth cohort of 6,180,400 singleton children born in England between 1 September 2003 and 31 August 2013 using linked administrative records from the ECHILD database. MCAs were identified using hospital admission and mortality records during infancy. SEN provision in primary school was defined by one or more recording of SEN provision in state-school records during years 1 to 6 (ages 5/6 years to 10/11 years).

Results: Children with any MCA had a 5-year survival rate of 95.1% (95% confidence interval (CI) 95.0, 95.2) compared with 99.7% (95% CI 99.7, 99.7) among children without an MCA. 41.6% (75,381/181,324) of children with an MCA had any recorded SEN provision in primary school compared with 25.7% (1,285,572/5,008,598) of unaffected children. Of the 12 system-specific MCA subgroups, children with chromosomal, nervous system and eye anomalies had the highest prevalence of recorded SEN provision. The prevalence of recorded SEN provision decreased by 4.8% (99% CI -5.4, -4.3) for children with any MCA compared with a reduction of 4.2% (99% CI -4.3, -4.2) for unaffected children, when comparing pupils in year 1 before and after 2014.

Conclusion: We observed that approximately two fifths of children with MCAs have some type of SEN provision recorded during primary school, but this proportion varied according to condition and declined following the 2014 SEN reforms, similar to children unaffected by MCAs.

Introduction: We present a prototype solution for improving transparency and quality assurance of the data linkage process through data provenance tracking designed to assist Data Analysts, researchers and information governance teams in authenticating and auditing data workflows within a Trusted Research Environment (TRE).

Methods: Using a participatory design process with Data Analysts, researchers and information governance teams, we undertook a contextual inquiry, user requirements interviews, co-design workshops, low-fidelity prototype evaluations. Public Engagement and Involvement activities underpinned the methods to ensure the project and approaches met the public's trust for semi-automating data processing. These helped inform methods for technical implementation, applying the PROV-O ontology to create a derived ontology following the four-step Linked Open Terms methodology and development of automated scripts to collect provenance information for the data processing workflow.

Results: The resulting Provenance Explorer for Trusted Research Environments (PE-TRE) interactive tool displays the data linkage information extracted from a knowledge graph described using the derived SHP ontology and results of rule-based validation checks. User evaluations confirmed PE-TRE would contribute to better quality data linkage and reduce data processing errors.

Conclusion: This project demonstrates the next stage in advancing transparency and quality assurance within TREs by semi-automating and systematising data tracking in a single tool throughout the data processing lifecycle, improving transparency, openness and quality assurance.

Introduction: Determining risk factors and consequences of serious violence requires accurate measures of violence. Self-reported and police-recorded offending are subject to different sources of bias.

Objectives: To compare risk of self-reported and police-recorded serious violence perpetration in late adolescence and early adulthood using linked UK birth cohort and police data, to examine the association between cohort participation and police-recorded violence, and to use police-records to impute missing self-reported data on violence.

Methods: We included individuals in the Avon Longitudinal Study of Parents and Children (ALSPAC) who had been informed about the study's use of their linked data and had not opted out of linkage to police records (n = 12,662). We used descriptive statistics and logistic regression to address our objectives. Multiple imputation using chained equations was used to impute self-reported violence data to examine the likely impact of missing data on estimates of prevalence.

Results: Self-reported violence perpetration in the past year ranged from 5.3% (at 25 years) to 12.9% (at 20 years) among males and 3.2% (at 17, 22, 24 and 25 years) to 6.4% (at 18 years) among females. Police-recorded serious violence was lower at all ages, peaking at 17-18 years (1.7% among males, 0.5% among females). Study participation was lower among people who had or went on to have a police record for serious violence; as a result, the prevalence of self-reported violence in the imputed data was higher (compared to observed data) at all ages.

Conclusions: Overall, our study demonstrates the difficulties in measuring violence. While we have shown that a key advantage of linkage to police records is it enables outcomes to be measured irrespective of study participation, police data undercounts serious violence. Further, observational studies may also underestimate violence perpetration as individuals with police-recorded serious violence are less likely to participate in research. Therefore, while record linkage allows the advantages of both official police records and self-reported measures to be exploited, it does not negate their limitations.

Introduction: Each year, children's social care (CSC) recognises around 3% of all children as children in need (CiN) of intervention, including those who receive a child protection plan due to risks of substantial harm and those who become looked after in state care. A previous cumulative estimate of the incidence of becoming CiN of 14% to age 5 indicates that the childhood lifetime incidence is likely very high.

Objectives: We aimed to estimate the cumulative incidence of referrals, social work assessments, being recognised as a CiN or made subject to a child protection plan (CPP) before age 18 in England.

Methods: The annual CiN census contains all-of-England longitudinal records of CSC referrals. Data collection began in 2008, meaning there is no cohort that can be followed up from birth to age 17 (i.e., before 18^th birthday). Analyses revealed data quality issues before 2011/12. We estimated the above cumulative incidences in three cohorts and combined them, adjusting numerators to account for left-censoring. The three cohorts were children born in: (a) 2012/13, followed to age 5; (b) 2005/06, followed from age 6 age to 12; and (c) 2000/01, followed from age 13 to 17. We carried out sensitivity analyses to address possible bias induced by linkage error using one of two encrypted identifiers in the dataset.

Results: Of all children living in England, before turning 18, 35.4% were referred, 32.3% were assessed, 25.3% were recorded as CiN and 6.9% were subject to a CPP (37.5%, 34.6%, 26.0% and 7.1%, respectively, in sensitivity analyses).

Conclusions: By age 18, an estimated 1 in 4 children are identified by CSC as needing support at some point. Government should monitor the cumulative incidence of ever receiving CSC support with a view to addressing upstream health and social determinants.

Background: Research and surveillance using routinely collected health data rely on algorithms or definitions to ascertain disease cases or health measures. Whenever algorithm validation studies are not possible due to the unavailability of a reference standard, algorithm feasibility studies can be used to create and assess algorithms for use in more than one population or jurisdiction. Publication of the methods used to conduct feasibility studies is critical for reproducibility and transparency. Existing guidelines applicable to feasibility studies include the STrengthening the Reporting of OBservational studies in Epidemiology (STROBE) and REporting of studies Conducted using Observational Routinely collected health Data (RECORD) guidelines. These guidelines may benefit from additional elements that capture aspects particular to multi-jurisdiction algorithm feasibility studies and ensure their reproducibility. The aim of this paper is to identify the minimum elements for reporting feasibility studies to ensure reproducibility and transparency.

Methods: A subcommittee of four individuals with expertise in routinely collected health data, multi-jurisdiction health research, and algorithm development and implementation was formed from Health Data Research Network (HDRN) Canada's Algorithms and Harmonized Data Working Group (AHD-WG). The subcommittee reviewed items within the STROBE and RECORD guidelines and evaluated these items against published feasibility studies. Items to ensure transparent reporting of feasibility studies not contained within STROBE or RECORD guidelines were identified through consensus by subcommittee members using the Nominal Group Technique. The AHD-WG reviewed and approved these additional recommended elements.

Results: Eleven new recommended elements were identified: one element for the title and abstract, one for the introduction, five for the methods, and four for the results sections. Recommended elements primarily addressed reporting jurisdictional data variabilities, data harmonization methods, and algorithm implementation techniques.

Significance: Implementation of these recommended elements, alongside the RECORD guidelines, is intended to encourage consistent publication of methods that support reproducibility, as well as increase comparability of algorithms and their use in national and international studies.

Introduction: Household overcrowding is an important determinant of health and is associated with adverse child health, educational and social outcomes.

Objectives: We aimed to determine whether households with dependent children were more likely to be overcrowded after taking into account household ethnicity and housing tenure in an urban, ethnically diverse, and disadvantaged London population by pseudonymously linking health and property data.

Methods: We used pseudonymised Unique Property Reference Numbers to link electronic health records to Energy Performance Certificate property data in north-east London and identified 332,473 households comprising 1,093,047 people. Our primary outcomes were overcrowding measures based on a bedroom standard and a space standard (space per person; m²). We examined household level associations of overcrowding with presence of children in the household before and after adjusting for household ethnicity and tenure. We used multivariable logistic regression to estimate the adjusted odds (aOR) and 95% Confidence Intervals (CI) of bedroom standard overcrowding and linear regression to estimate effects (95% CI) on space per person.

Results: Overall, 42.8% (142,401/332,473) of households included children, 54.5% were of White household ethnicity, and 58.4% in private or social rented accommodation. 22.5% (32,075/142,401) and 45.9% (65,388/142,401) of households with children were overcrowded by the bedroom and space standards respectively compared with 4.7% (8,953/190,072) and 9.6% (18,229/190,072) without children. After adjusting for household ethnicity and housing tenure, households with children were more likely to be overcrowded (aOR [95% CI] 5.54 [5.40-5.68] and had 22.61m² (95%CI: -22.75,-22.46) less space per person than those without children.

Conclusions: Up-to-date estimates of household overcrowding measured by bedroom and space standards can be derived from linked housing and health records. Our findings highlight the inequalities in overcrowding experienced by households with children and enable future work using linked data to evaluate impacts of overcrowding on children's health.

Introduction: The Disability Statistics (DS) Database provides internationally comparable statistics to monitor the rights of persons with disabilities. The Disability Statistics - Estimates (DS-E) Database includes national and subnational descriptive statistics based on the analysis and disaggregation of national population and housing censuses and household surveys. The database can inform policies and programs to advance the rights of persons with disabilities.

Methods: As of 2024, the DS-E Database includes estimates for 29 indicators providing information on the prevalence of disability and associations with education, personal activities, health, standards of living, insecurity, and multidimensional poverty. Estimates are based on 53 national datasets, including 23 population and housing censuses and 30 household surveys for 40 countries. The results were disaggregated by type and severity for adults and population subgroups (women, men, rural and urban residents, age groups 15 to 29, 30 to 44, 45 to 64, 65 and older). Estimates are also available at the first subnational level for all countries and at the second subnational level for 17 countries.

Results: At the time of publication, the DS-E Database includes 40 countries and 6,584 subnational locations, with more than 4.3 million estimates of indicators by disability status for adults and population subgroups. Results are in an interactive platform and in downloadable tables where both means and standard errors are available. The DS-E Database results indicate consistent inequalities within and across countries that show that persons with disabilities are more likely to experience deprivations and multidimensional poverty.

Conclusion: The DS-E Database provides statistics on the disparities people with disabilities experience, which can be used to support advocacy for disability-inclusive policy and practice. It provides statistics on outcomes such as education, health, employment. Outcomes can be matched with environmental, service delivery and other datasets to provide insights into, for example, where people with disabilities are left behind and where services are needed.

Introduction: The 2030 Sustainable Development Agenda and the United Nations Convention on the Rights of Persons with Disabilities (CRPD) aspire to leave no one behind and call for the inclusion of persons with disabilities in all spheres of life. To monitor this goal of inclusion, CRPD's Article 31 requires state parties to collect data about the situation of persons with disabilities. The Disability Statistics - Questionnaire Review Database (DS-QR Database) reports on whether population and housing censuses and household surveys include internationally recommended disability questions for adults ages 15 and older.

Methods: The Disability Data Initiative (DDI), an international consortium of researchers, regularly retrieves and analyses a list of surveys and censuses from international catalogs, libraries and websites of national statistics offices. Questionnaires are reviewed to identify if they include internationally recommended questions on functional difficulties (e.g. difficulty seeing), more specifically (i) the Washington Group Short Set (WG-SS) or (ii) questions that meet at least the United Nations 2017 guidelines for disability measurement in censuses (other functional difficulty questions thereafter).

Results: The DS-QR Database includes the review results for the questionnaires of 3027 population censuses and surveys from 199 countries and territories collected from 2009 to 2023. The review has information on whether each dataset has the WG-SS or other functional difficulty questions and overall results per country, region, type of dataset and over time.

Conclusion: By identifying countries that collect internationally comparable disability data, the DS-QR Database can help researchers, policymakers and advocates determine whether countries fulfill their obligations as per CRPD Article 31. It can also assist in identifying which datasets use functional difficulty questions and can be used to research and monitor disability rights over time and across countries. The DS-QR Database is in a Supplementary file and will be accessible on a website upon publication of this article.

Introduction: Up to 30% of newborns with in-utero selective serotonin reuptake inhibitor (SSRI) exposure experience withdrawal symptoms. The impact of newborn feeding method on alleviating withdrawal has not been investigated. We examined the effect of newborn feeding method (breastfeeding versus formula) among a cohort of Neonates With In-utero SSRI Exposure (NeoWISE).

Methods: This population-based retrospective cohort study included newborns born in Ontario hospitals between April 1, 2012, and March 31, 2020 to Ontario Drug Benefit Program beneficiaries who filled at least one SSRI prenatal prescription. Linked administrative health and registry data were used. Method of newborn feeding was available from birth to hospital discharge. The primary outcome was newborn withdrawal. The secondary outcome was transfer to the Neonatal Intensive Care Unit (NICU). Adjusted risk ratios (adjRR) in breast- versus formula-fed newborns and our outcomes were estimated using generalized linear models. Propensity scores based on antepartum and intrapartum characteristics and inverse probability of treatment weighting were used to balance differences in maternal-newborn characteristics by treatment.

Results: Overall, 5,079 newborns were included in the NeoWISE Cohort, with 3,321 (65.4%) exclusively breastfeeding from birth to hospital discharge. Among the breastfed newborns, 50 (1.5%) had neonatal withdrawal versus 41 (2.3%) in the formula-fed newborns. There was no difference in risk of withdrawal in breast versus formula-fed newborns (adjRR 0.86, 95% CI 0.56, 1.34). Breastfed newborns had a reduced risk of transfer to the NICU compared to formula-fed newborns (adjRR 0.80, 95% CI 0.66, 0.97); however, this finding did not persist in sensitivity analysis.

Conclusion: The rate of newborn withdrawal was low in this cohort of SSRI-exposed neonates and was not associated with feeding method in the hospital. The results of this study inform shared decision-making around newborn feeding for perinatal women who take SSRI medications.

Introduction: The early years are considered one of the most impactful points in the life course to intervene to improve population health and reduce health inequalities because, for example, both ill health and social disadvantage can track into adulthood. Scotland's outstanding systems for data linkage offer untapped potential to further our understanding of when and why inequalities in child health, development and wellbeing emerge. This understanding is vital for the consideration of policy options for their reduction.

Methods: Birth registrations, hospital episodes, dispensed community prescriptions, child health reviews and immunisation records were linked for 198,483 mother-child pairs for babies born in Scotland from October 2009 to the end of March 2013, followed up until April 2018 (average age 6 years).

Results: Outcomes include birthweight and newborn health, dispensed prescriptions for mental health medications, tobacco smoke exposure, infant feeding, immunisations, hospitalisation for unintentional injuries, socio-emotional, cognitive and motor development, and overweight and obesity. Several measures are repeated throughout childhood allowing examination of timing, change and persistence. Socio-economic circumstances (SECs) include neighbourhood deprivation, relationship status of the parents, and occupational status. Descriptive analyses highlight large inequalities across all outcomes. Inequalities are greater when measured by family-level as opposed to area-level, aspects of socio-economic circumstances and for persistent or more severe outcomes. For example, 41.4% of the most disadvantaged children (living with a lone, economically inactive mother in the most deprived fifth of areas) were exposed to tobacco smoke in utero and in infancy/toddlerhood compared to <1% in the least disadvantaged children (living with a married, managerial/professional mother in the least deprived quintile of areas).

Conclusion: This novel linkage provides a longitudinal picture of health throughout the early years and how this varies according to family- and area-level measures of SECs. Future linkages could include other family members (e.g. siblings, grandmothers) and other sectors (e.g. education, social care). The creation of additional cohorts would allow for long-term and efficient evaluation of policies as natural experiments.