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Neonates With In-Utero SSRI Exposure (NeoWISE): a retrospective cohort study examining the effect of newborn feeding method on newborn withdrawal. 腹中有 SSRI 暴露的新生儿(NeoWISE):一项回顾性队列研究,探讨新生儿喂养方法对新生儿戒断的影响。
IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-12-10 eCollection Date: 2024-01-01 DOI: 10.23889/ijpds.v9i2.2458
Christina Cantin, Wenbin Li, Erna Snelgrove-Clarke, Daniel Corsi, Cindy-Lee Dennis, Amanda Ross-White, Susan Brogly, Laura Gaudet

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.

高达30%的新生儿与子宫内选择性血清素再摄取抑制剂(SSRI)暴露经历戒断症状。新生儿喂养方法对缓解戒断反应的影响尚未调查。我们研究了新生儿喂养方式(母乳喂养vs配方奶)对子宫内SSRI暴露(NeoWISE)新生儿队列的影响。方法:这项以人群为基础的回顾性队列研究纳入了2012年4月1日至2020年3月31日期间在安大略省医院出生的新生儿到安大略省药物福利计划受益人,这些受益人至少服用了一种SSRI产前处方。使用了关联的管理运行状况和注册中心数据。新生儿喂养方法从出生到出院。主要结局为新生儿戒断。次要结局是转到新生儿重症监护病房(NICU)。母乳喂养与配方奶喂养新生儿的调整风险比(adjRR)和我们的结果使用广义线性模型进行估计。使用基于产前和产时特征的倾向得分和治疗加权逆概率来平衡治疗对母婴特征的差异。结果:总的来说,5079名新生儿被纳入NeoWISE队列,其中3321名(65.4%)从出生到出院全母乳喂养。在母乳喂养的新生儿中,50例(1.5%)出现新生儿戒断反应,而配方奶喂养的新生儿中有41例(2.3%)出现戒断反应。母乳喂养的新生儿与配方奶喂养的新生儿在停药风险上没有差异(相对危险度0.86,95% CI 0.56, 1.34)。与配方奶喂养的新生儿相比,母乳喂养的新生儿转到新生儿重症监护病房的风险降低(adjRR 0.80, 95% CI 0.66, 0.97);然而,这一发现并没有在敏感性分析中持续存在。结论:ssri暴露的新生儿戒断率较低,与医院喂养方式无关。本研究的结果为服用SSRI药物的围产期妇女在新生儿喂养方面的共同决策提供了信息。
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引用次数: 0
Secondary use of routinely collected administrative health data for epidemiologic research: Answering research questions using data collected for a different purpose. 二级使用常规收集的行政卫生数据进行流行病学研究:使用为不同目的收集的数据回答研究问题。
IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-11-19 eCollection Date: 2024-01-01 DOI: 10.23889/ijpds.v9i1.2407
Scott D Emerson, Taylor McLinden, Paul Sereda, Amanda M Yonkman, Jason Trigg, Sandra Peterson, Robert S Hogg, Kate A Salters, Viviane D Lima, Rolando Barrios

The use of routinely collected administrative health data for research can provide unique insights to inform decision-making and, ultimately, support better public health outcomes. Yet, since these data are primarily collected to administer healthcare service delivery, challenges exist when using such data for secondary purposes, namely epidemiologic research. Many of these challenges stem from the researcher's lack of control over the quality and consistency of data collection, and - furthermore - a lessened understanding of the data being analyzed. That said, we assert that these challenges can be partly mitigated through careful, systematic use of these data in epidemiologic research. This article presents considerations derived from experiences analyzing administrative health data (e.g., healthcare practitioner billings, hospitalizations, and prescription medication data) in the Canadian province of British Columbia (population of over 5 million in 2024), though we believe the underlying principles generalize beyond this region. Key considerations were organized around four themes: 1) Know the data and their primary use (understand their scope and limitations); 2) Understand classification and coding systems (appreciate the nuances regarding classification systems, versions, how they are employed in the primary uses of the data, and querying the values); 3) Transform data into meaningful forms (process data and apply identification algorithms, when necessary); 4) Recognize the importance of validity when defining analytic variables (make meaningful inferences based on data/algorithms). Although this article is not an exhaustive list of all considerations, we believe that it will provide pragmatic insights for those interested in leveraging administrative health data for epidemiologic research.

使用常规收集的行政卫生数据进行研究可以提供独特的见解,为决策提供信息,并最终支持更好的公共卫生成果。然而,由于收集这些数据主要是为了管理医疗保健服务的提供,因此在将这些数据用于次要目的(即流行病学研究)时存在挑战。许多这些挑战源于研究人员缺乏对数据收集的质量和一致性的控制,而且-进一步-对正在分析的数据的理解减少。也就是说,我们断言,通过在流行病学研究中仔细、系统地使用这些数据,可以部分减轻这些挑战。本文介绍了从分析加拿大不列颠哥伦比亚省(2024年人口超过500万)的行政卫生数据(例如,医疗保健从业者的账单、住院和处方药数据)的经验中得出的考虑,尽管我们认为基本原则适用于该地区以外的地区。主要考虑因素围绕四个主题进行组织:1)了解数据及其主要用途(了解其范围和局限性);2)了解分类和编码系统(了解分类系统、版本、它们在数据的主要用途中如何使用以及查询值方面的细微差别);3)将数据转换为有意义的形式(必要时处理数据并应用识别算法);4)在定义分析变量时认识到有效性的重要性(根据数据/算法做出有意义的推断)。虽然本文不是所有考虑因素的详尽列表,但我们相信它将为那些对利用行政卫生数据进行流行病学研究感兴趣的人提供实用的见解。
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引用次数: 0
Validity of heart failure diagnoses, treatments, and readmissions in the Danish National Patient Registry. 丹麦国家患者登记中心心衰诊断、治疗和再入院的有效性。
IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-21 eCollection Date: 2024-01-01 DOI: 10.23889/ijpds.v6i1.2394
Kasper Bonnesen, Christoffer Tobias Witt, Brian Løgstrup, Hans Eiskjær, Morten Schmidt

Background: The Danish National Patient Registry (DNPR) is a valuable resource for population-based research, but the validity of routine registration of advanced heart failure (HF) treatments within the registry is unknown. We, therefore, investigated the validity of HF, advanced HF treatments, and HF readmissions in the DNPR.

Methods: We randomly sampled patients registered at a Danish University Hospital during 2017-2021 from the DNPR. We identified 200 patients with first-time HF, 390 patients with one of eight advanced HF treatments, and 133 patients with HF admission after implantable cardioverter-defibrillator (ICD) or cardiac resynchronisation therapy (CRT). Compared with medical record reviews, we calculated positive predictive values (PPVs) with 95% confidence intervals (CIs).

Results: The PPV for first-time HF was 81% (95% CI: 74-86%). For advanced HF treatments, the PPV was 97% (95% CI: 91-99%) for ICD, 96% (95% CI: 86-100%) for CRT-pacemaker, 88% (95% CI: 76-95%) for CRT-defibrillator, 100% (95% CI: 83-100%) for left ventricular assist device, 43% (95% CI: 18-71%) for intra-aortic balloon pump, 38% (95% CI: 25-35%) for impella, 100% (95% CI: 93-100%) for cardiopulmonary support, and 100% (95% CI: 94-100%) for heart transplantation. The PPV for HF admission after ICD was 25% (95% CI: 16-37%) and 18% (95% CI: 9.2-30%) after CRT.

Conclusions: The PPV of routine registrations in the DNPR was moderate for first-time HF, high for most advanced HF treatments, and low for HF admissions after ICD or CRT. Thus, the DNPR is a valuable data source for population-based research on first-time HF and many advanced HF treatments.

背景:丹麦国家患者登记处(Danish National Patient Registry,DNPR)是基于人群的研究的宝贵资源,但该登记处对晚期心衰(HF)治疗的常规登记的有效性尚不清楚。因此,我们对 DNPR 中心衰、晚期心衰治疗和心衰再入院的有效性进行了调查:我们从 DNPR 中随机抽取了 2017-2021 年期间在一家丹麦大学医院登记的患者。我们确定了 200 名首次接受高频治疗的患者、390 名接受八种高级高频治疗之一的患者,以及 133 名植入式心律转复除颤器(ICD)或心脏再同步化治疗(CRT)后入院的高频患者。与病历审查相比,我们计算了阳性预测值(PPV)和 95% 置信区间(CI):首次接受心房颤动治疗的阳性预测值为 81%(95% 置信区间:74-86%)。对于晚期 HF 治疗,ICD 的 PPV 为 97% (95% CI: 91-99%),CRT-起搏器的 PPV 为 96% (95% CI: 86-100%),CRT-除颤器的 PPV 为 88% (95% CI: 76-95%),左心室辅助装置的 PPV 为 100% (95% CI: 83-100%),人工心脏的 PPV 为 43% (95% CI: 18-71%):主动脉内球囊泵为 43%(95% CI:18-71%),冲击泵为 38%(95% CI:25-35%),心肺支持为 100% (95% CI:93-100%),心脏移植为 100% (95% CI:94-100%)。ICD 后 HF 入院的 PPV 为 25% (95% CI: 16-37%),CRT 后为 18% (95% CI: 9.2-30%):DNPR中常规登记的PPV对首次HF而言是中等的,对大多数晚期HF治疗而言是高的,而对ICD或CRT后HF入院而言是低的。因此,DNPR 是以人群为基础研究首次 HF 和许多晚期 HF 治疗的宝贵数据来源。
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引用次数: 0
Creating an 11-year longitudinal substance use harm cohort from linked health and census data to analyse social drivers of health. 根据相关的健康和人口普查数据,创建一个为期11年的药物使用危害纵向队列,以分析健康的社会驱动因素。
IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-17 eCollection Date: 2024-01-01 DOI: 10.23889/ijpds.v9i1.2412
Anousheh Marouzi, Charles Plante, Barbara Fornssler

Introduction: Research on substance use harm in Canada has been hampered by an absence of linked data to analyse and report on the social drivers of substance use harm.

Objectives: This study aims to address this gap by providing a fully annotated Stata do-file that links sociodemographic data to 11 years of hospitalisation and death outcomes. This do-file will greatly facilitate the creation of provincial and national substance use cohorts using line-level data available through Statistics Canada's Research Data Centres (RDC) program.

Methods: We used Canadian Census Health and Environment Cohorts (CanCHEC) 2006 to create a cohort of Saskatchewanians followed from 2006 to 2016. We linked sociodemographic information of the 2006 Census (long-form) respondents to their hospitalisation data captured in the Discharge Abstract Database (DAD) (2006 to 2016) and their mortality records in the Canadian Vital Statistics Death Database (CVSD) (2006 to 2016). We developed an algorithm to identify Saskatchewanians who experienced a substance use harm event. We validated the cohort by comparing our descriptive findings with those from other Canadian studies on substance use.

Results: We used CanCHEC, a national data resource, whereas most previous studies have used provincial data resources. Despite this difference in constructing the cohorts, our results showed trends consistent with previous studies, including an overrepresentation of individuals with lower socioeconomic status among the people who experienced substance use harm (PESUH). Similar to other Canadian studies, our results indicate an increasing rate of substance use harm from 2006 to 2016.

Conclusion: This study provides a Stata do-file that compiles a validated substance use cohort using CanCHEC, enabling comprehensive substance use research by linking sociodemographic data with health outcomes. The do-file is likely to save researchers hundreds of hours and accelerate research on the drivers of substance use harms in Canada.

导言:由于缺乏分析和报告物质使用危害的社会驱动因素的相关数据,加拿大关于物质使用危害的研究受到了阻碍。目的:本研究旨在通过提供一个完整注释的Stata - dofile来解决这一差距,该文件将社会人口统计数据与11年的住院和死亡结果联系起来。该文件将极大地促进使用加拿大统计局研究数据中心(RDC)计划提供的线级数据创建省和国家物质使用队列。方法:我们使用2006年加拿大人口普查健康与环境队列(CanCHEC)创建了一个萨斯喀彻温省人队列,随访时间为2006年至2016年。我们将2006年人口普查(长格式)受访者的社会人口统计信息与他们在出院摘要数据库(DAD)(2006年至2016年)中捕获的住院数据以及他们在加拿大生命统计死亡数据库(CVSD)(2006年至2016年)中的死亡率记录联系起来。我们开发了一种算法来识别经历过物质使用伤害事件的萨斯喀彻温省人。我们通过将我们的描述性发现与加拿大其他药物使用研究的结果进行比较,验证了这一队列。结果:我们使用了国家数据资源CanCHEC,而之前的大多数研究使用的是省级数据资源。尽管在构建队列方面存在这种差异,但我们的结果显示了与先前研究一致的趋势,包括在经历物质使用伤害(PESUH)的人群中社会经济地位较低的个体的过度代表。与加拿大的其他研究类似,我们的研究结果表明,从2006年到2016年,药物使用危害的比例在上升。结论:本研究提供了一个Stata do-file,使用CanCHEC编制了一个经过验证的物质使用队列,通过将社会人口统计数据与健康结果联系起来,实现了全面的物质使用研究。这份文件可能会为研究人员节省数百个小时,并加速对加拿大物质使用危害驱动因素的研究。
{"title":"Creating an 11-year longitudinal substance use harm cohort from linked health and census data to analyse social drivers of health.","authors":"Anousheh Marouzi, Charles Plante, Barbara Fornssler","doi":"10.23889/ijpds.v9i1.2412","DOIUrl":"https://doi.org/10.23889/ijpds.v9i1.2412","url":null,"abstract":"<p><strong>Introduction: </strong>Research on substance use harm in Canada has been hampered by an absence of linked data to analyse and report on the social drivers of substance use harm.</p><p><strong>Objectives: </strong>This study aims to address this gap by providing a fully annotated Stata do-file that links sociodemographic data to 11 years of hospitalisation and death outcomes. This do-file will greatly facilitate the creation of provincial and national substance use cohorts using line-level data available through Statistics Canada's Research Data Centres (RDC) program.</p><p><strong>Methods: </strong>We used Canadian Census Health and Environment Cohorts (CanCHEC) 2006 to create a cohort of Saskatchewanians followed from 2006 to 2016. We linked sociodemographic information of the 2006 Census (long-form) respondents to their hospitalisation data captured in the Discharge Abstract Database (DAD) (2006 to 2016) and their mortality records in the Canadian Vital Statistics Death Database (CVSD) (2006 to 2016). We developed an algorithm to identify Saskatchewanians who experienced a substance use harm event. We validated the cohort by comparing our descriptive findings with those from other Canadian studies on substance use.</p><p><strong>Results: </strong>We used CanCHEC, a national data resource, whereas most previous studies have used provincial data resources. Despite this difference in constructing the cohorts, our results showed trends consistent with previous studies, including an overrepresentation of individuals with lower socioeconomic status among the people who experienced substance use harm (PESUH). Similar to other Canadian studies, our results indicate an increasing rate of substance use harm from 2006 to 2016.</p><p><strong>Conclusion: </strong>This study provides a Stata do-file that compiles a validated substance use cohort using CanCHEC, enabling comprehensive substance use research by linking sociodemographic data with health outcomes. The do-file is likely to save researchers hundreds of hours and accelerate research on the drivers of substance use harms in Canada.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"9 1","pages":"2412"},"PeriodicalIF":1.6,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11606630/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142773201","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Research data use in a digital society: a deliberative public engagement. 数字社会中的研究数据使用:审慎的公众参与。
IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-14 eCollection Date: 2024-01-01 DOI: 10.23889/ijpds.v9i1.2372
Kimberlyn M McGrail, Jack Teng, Colene Bentley, Kieran C O'Doherty, Michael M Burgess

Background: Sources of public and private data and ways to link them continue to evolve. This offers new opportunities for research, and new reasons for data-holding organisations to form partnerships. While research using these data can be beneficial, there is also a potential for negative consequences for some individuals or groups, including unintended or unanticipated effects. It is important to consult the public on how we might achieve both opportunities to link different types of data for research purposes, and protections against the misuse of data and the possibility of negative consequences.

Methods: Combining data sources for research was the topic of four days of deliberation held in British Columbia, Canada in late 2019. Public deliberation events bring diverse groups of people together to give direct input to policy makers, through carefully structured in-depth discussion on issues that are controversial and/or a source of public concern. Participants discussed whether data from electronic medical records should be used for research purposes, whether it is acceptable to combine data from public and private sources, who should authorise its use in research, and how a public advisory group on data use might be structured.

Results: Over four days, 29 residents of BC developed 17 deliberative conclusions that can be grouped into four broad topic areas: balancing benefit and potential harms when linking data; the protections that are expected to govern use of data; the type of authorisation required; and how the public should be involved in an ongoing way. Overall, the public is very supportive of research as long as oversight and controls are in place, including ongoing input from members of the public.

Conclusion: Deliberative conclusions from this event provide essential public input on the use of linked data for research, in particular when those data come from multiple sources. This is important information as policy-makers continue to develop legislation and practices around the use and linkage of both public and private sources of data.

背景:公共和私人数据的来源以及连接它们的方式在不断发展。这为研究提供了新的机会,也为数据持有组织建立伙伴关系提供了新的理由。虽然使用这些数据进行研究可能是有益的,但也可能对某些个人或群体产生负面影响,包括意想不到或未预料到的影响。重要的是,我们应该咨询公众,了解我们如何既能有机会将不同类型的数据联系起来用于研究目的,又能防止数据滥用和可能产生的负面后果。方法:结合数据来源进行研究是2019年底在加拿大不列颠哥伦比亚省举行的为期四天的审议主题。公众审议活动将不同群体聚集在一起,通过对有争议和/或公众关注的问题进行精心组织的深入讨论,向政策制定者提供直接意见。与会者讨论了电子医疗记录的数据是否应用于研究目的,将公共和私人来源的数据结合起来是否可以接受,谁应授权在研究中使用这些数据,以及如何组织一个关于数据使用的公共咨询小组。结果:在四天的时间里,不列颠哥伦比亚省的29名居民得出了17个经过审议的结论,这些结论可以分为四个广泛的主题领域:在连接数据时平衡利益和潜在危害;管理数据使用的保护措施;所需的授权类型;以及公众应该如何持续参与。总的来说,只要监督和控制到位,包括公众成员的持续投入,公众就非常支持研究。结论:本次活动的审慎结论为使用关联数据进行研究提供了重要的公众意见,特别是当这些数据来自多个来源时。这是重要的信息,因为决策者继续围绕公共和私人数据来源的使用和联系制定立法和做法。
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引用次数: 0
Co-resident grandparent and maternal employment. A Northern Ireland cross-sectional administrative data analysis. 共同居住的祖父母和母亲就业。北爱尔兰横断面行政数据分析。
IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-09 eCollection Date: 2024-01-01 DOI: 10.23889/ijpds.v9i1.2143
Ana Corina Miller, Dermot O'Reilly, David Wright

The trade-off between the costs of childcare provision and the benefits of having an increased proportion of women, particularly women with dependent children, in employment is one of the most taxing social issues for Western governments. In countries like Northern Ireland, the limited subsidised childcare provision for preschool and primary school children has been partially offset by a rise in informal childcare though this has been considerably hard to assess both in terms of magnitude and effect. Using the entire 2011 Census cohort of mothers with children aged 1 to 16 years of age, we argue that co-resident grandparents have a substantial positive impact on maternal labour force participation in Northern Ireland. The presence of a co-resident grandparent was associated with an increase of 3.7 percentage points in employment for single-parent mothers and 2 percentage points for mothers in two-parent households. Mothers with co-resident grandparents report an increase of 2.7 percentage points for a single mother and of 3.7 percentage points for a mother in a two-parent household being in full-time employment than mothers without. Overall, the presence of a co-resident grandparent was associated with at least a 3.2 percentage point increase in labour force participation among mothers with primary-school-age children.

对西方政府来说,在提供儿童保育的成本和增加女性(尤其是有抚养子女的女性)就业比例所带来的好处之间进行权衡,是最棘手的社会问题之一。在像北爱尔兰这样的国家,为学龄前和小学儿童提供的有限的补贴托儿服务部分被非正规托儿服务的增加所抵消,尽管这在规模和效果方面都相当难以评估。利用2011年人口普查中子女年龄在1至16岁的母亲的整个队列,我们认为共同居住的祖父母对北爱尔兰母亲的劳动力参与有实质性的积极影响。与祖父母共同居住的家庭,单亲母亲的就业率增加3.7个百分点,双亲家庭的母亲就业率增加2个百分点。有祖父母同住的母亲报告说,与没有祖父母同住的母亲相比,单亲母亲的比例增加了2.7个百分点,双亲家庭中全职工作的母亲的比例增加了3.7个百分点。总体而言,共同居住的祖父母的存在与至少增加3.2个百分点的有小学学龄儿童的母亲的劳动力参与率有关。
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引用次数: 0
Validation of preterm birth related perinatal and neonatal data in the Canadian discharge abstract database to facilitate long-term outcomes research of individuals born preterm. 验证加拿大出院摘要数据库中与早产有关的围产期和新生儿数据,以促进对早产儿的长期预后研究。
IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-08 eCollection Date: 2024-01-01 DOI: 10.23889/ijpds.v9i1.2380
Deepak Louis, Peace Eshemokhai, Chelsea Ruth, Kristene Cheung, Lisa M Lix, Lisa Flaten, Prakesh S Shah, Allan Garland

Introduction: The Canadian Institute of Health Information's (CIHI) Discharge Abstract Database (DAD) contains standardised administrative data on all hospitalisations in Canada, excluding Quebec.

Objectives: We aimed to validate preterm birth related perinatal and neonatal data in DAD by assessing its accuracy against the reference standard of the Canadian Neonatal Network (CNN) database.

Methods: We linked birth hospitalization data between the DAD and CNN databases for all neonates born <33 weeks gestational age (GA) admitted to the Neonatal Intensive Care Units in Winnipeg, Canada, between 2010 and 2022. A comprehensive list of maternal and neonatal variables relevant to preterm birth was chosen a priori for validation. For categorical variables, we measured correlation using Cohen's weighted kappa (k) and for continuous variables, we measured agreement using Lin's concordance correlation coefficient (LCCC).

Results: 2084 neonates were included (mean GA 29.4 ± 2.4 weeks; birth weight 1430 ± 461g). Baseline continuous maternal and neonatal variables showed excellent accuracy in DAD [Maternal age: LCCC = 0.99 (0.99, 0.99); GA: LCCC = 0.95 (0.95, 0.96); birth weight: LCCC = 0.97 (0.96, 0.97); sex: k = 0.99 (0.98-0.99)]. In contrast, the accuracy of the maternal baseline categorical variables and neonatal outcomes and interventions ranged from very good to poor [e.g., Caesarean section: k = 0.91 (0.89-0.93), pre-gestational diabetes: k = 0.04 (0.03-0.05), neonatal sepsis: k = 0.37 (0.31-0.42), bronchopulmonary dysplasia: k = 0.26 (0.19-0.33), neonatal laparotomy: k = 0.55 (0.43-067)].

Conclusion: Neonatal variables such as gestational age and birth weight had high accuracy in DAD, while the accuracy of maternal and neonatal morbidities and interventions were variable, with some being poor. Reasons for the inaccuracy of these variables should be identified and measures taken to improve them.

加拿大卫生信息研究所(CIHI)出院摘要数据库(DAD)包含加拿大除魁北克外所有住院的标准化管理数据。目的:我们旨在通过对比加拿大新生儿网络(CNN)数据库的参考标准来评估DAD中与早产相关的围产期和新生儿数据的准确性。方法:我们将DAD和CNN数据库中所有先天出生的新生儿的出生住院数据联系起来进行验证。对于分类变量,我们使用Cohen的加权kappa (k)来衡量相关性,对于连续变量,我们使用Lin的一致性相关系数(LCCC)来衡量一致性。结果:共纳入新生儿2084例(平均GA 29.4±2.4周;出生体重1430±461g)。基线连续的产妇和新生儿变量显示出极好的DAD准确性[产妇年龄:LCCC = 0.99 (0.99, 0.99);Ga: LCCC = 0.95 (0.95, 0.96);出生体重:LCCC = 0.97 (0.96, 0.97);性别:k = 0.99(0.98-0.99)]。相比之下,产妇基线分类变量和新生儿结局及干预措施的准确性从很好到很差[例如,剖宫产:k = 0.91(0.89-0.93),妊娠前糖尿病:k = 0.04(0.03-0.05),新生儿脓毒症:k = 0.37(0.31-0.42),支气管肺发育不良:k = 0.26(0.19-0.33),新生儿剖腹手术:k = 0.55(0.43-067)]。结论:胎龄、出生体重等新生儿变量在DAD诊断中准确性较高,而孕产妇和新生儿发病率及干预措施的准确性存在差异,有的准确性较差。应查明这些变量不准确的原因,并采取措施加以改进。
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引用次数: 0
Establishing a national linked database for Fetal Alcohol Spectrum Disorder (FASD) in the UK: multi-method public and professional involvement to determine acceptability and feasibility. 在英国建立胎儿酒精谱系障碍(FASD)的国家链接数据库:多方法公众和专业参与,以确定可接受性和可行性。
IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-19 eCollection Date: 2024-01-01 DOI: 10.23889/ijpds.v9i1.2381
Sarah K Harding, Beverley Samways, Amy Dillon, Sandra Butcher, Andy Boyd, Raja Mukherjee, Penny A Cook, Cheryl McQuire

Introduction: Fetal Alcohol Spectrum Disorder (FASD) is one of the leading non-genetic causes of developmental disability worldwide and is thought to be particularly common in the UK. Despite this, there is a lack of data on FASD in the UK.

Objective: To conduct public and professional involvement work to establish stakeholder views on the feasibility, acceptability, key purposes, and design of a national linked longitudinal research database for FASD in the UK.

Methods: We consulted with stakeholders using online workshops (one for adults with FASD [and their supporters] N = 5; one for caregivers of people with FASD (N=7), 1:1/small-team video calls/email communication with clinicians, policymakers, data-governance experts, third-sector representatives, and researchers [N=35]), and one hybrid clinical workshop (N = 17). Discussions covered data availability, benefits, challenges, and design preferences for a national pseudonymised linked database for FASD. We derived key themes from the notes and recordings collected across all involvement activities.

Results: Our tailored, multi-method approach generated high levels of stakeholder engagement. Stakeholders expressed support for a pseudonymised national linked database for FASD. Key anticipated benefits were the potential for: increased awareness and understanding of FASD leading to better support; new insights into clinical profiles leading to greater diagnostic efficiency; facilitating international collaboration; and increased knowledge of the long-term impacts of FASD on health, social care, education, economic and criminal justice outcomes. Given the rich data infrastructure established in the UK, stakeholders expressed that a national linked FASD database could be world-leading. Common stakeholder concerns were around privacy and data-sharing and the importance of retaining space for clinical judgement alongside insights gained from quantitative analyses.

Conclusions: Multi-method and multidisciplinary public and professional involvement activities demonstrated support for a national linked database for FASD in the UK. Flexible, diverse, embedded stakeholder collaboration will be essential as we establish this database.

导言:胎儿酒精中毒综合症(FASD)是导致全球发育障碍的主要非遗传原因之一,在英国尤为常见。尽管如此,英国仍缺乏有关 FASD 的数据:目的:开展公众和专业人士参与工作,以确定利益相关者对英国 FASD 国家链接纵向研究数据库的可行性、可接受性、主要目的和设计的看法:我们通过在线研讨会(一次针对患有 FASD 的成年人 [及其支持者] N = 5;一次针对 FASD 患者的照顾者 (N=7);与临床医生、政策制定者、数据管理专家、第三部门代表和研究人员进行 1:1/small-team 视频通话/电子邮件交流 [N=35])和一次混合临床研讨会(N = 17)征求利益相关者的意见。讨论内容包括数据可用性、益处、挑战以及全国性 FASD 化名链接数据库的设计偏好。我们从收集到的所有参与活动的笔记和录音中得出了关键主题:我们为利益相关者量身定制的多种方法引起了利益相关者的高度参与。利益相关者表示支持为 FASD 建立一个化名的国家链接数据库。预期的主要益处包括:提高对 FASD 的认识和理解,从而提供更好的支持;对临床概况有新的了解,从而提高诊断效率;促进国际合作;增加对 FASD 对健康、社会护理、教育、经济和刑事司法结果的长期影响的了解。鉴于英国已经建立了丰富的数据基础设施,利益相关者表示,一个全国联网的 FASD 数据库可能是世界领先的。利益相关者共同关注的问题包括隐私和数据共享,以及在定量分析获得见解的同时保留临床判断空间的重要性:多方法、多学科的公众和专业参与活动表明,人们支持在英国建立全国性的 FASD 链接数据库。在建立该数据库的过程中,灵活、多样、嵌入式的利益相关者合作至关重要。
{"title":"Establishing a national linked database for Fetal Alcohol Spectrum Disorder (FASD) in the UK: multi-method public and professional involvement to determine acceptability and feasibility.","authors":"Sarah K Harding, Beverley Samways, Amy Dillon, Sandra Butcher, Andy Boyd, Raja Mukherjee, Penny A Cook, Cheryl McQuire","doi":"10.23889/ijpds.v9i1.2381","DOIUrl":"10.23889/ijpds.v9i1.2381","url":null,"abstract":"<p><strong>Introduction: </strong>Fetal Alcohol Spectrum Disorder (FASD) is one of the leading non-genetic causes of developmental disability worldwide and is thought to be particularly common in the UK. Despite this, there is a lack of data on FASD in the UK.</p><p><strong>Objective: </strong>To conduct public and professional involvement work to establish stakeholder views on the feasibility, acceptability, key purposes, and design of a national linked longitudinal research database for FASD in the UK.</p><p><strong>Methods: </strong>We consulted with stakeholders using online workshops (one for adults with FASD [and their supporters] N = 5; one for caregivers of people with FASD (N=7), 1:1/small-team video calls/email communication with clinicians, policymakers, data-governance experts, third-sector representatives, and researchers [N=35]), and one hybrid clinical workshop (N = 17). Discussions covered data availability, benefits, challenges, and design preferences for a national pseudonymised linked database for FASD. We derived key themes from the notes and recordings collected across all involvement activities.</p><p><strong>Results: </strong>Our tailored, multi-method approach generated high levels of stakeholder engagement. Stakeholders expressed support for a pseudonymised national linked database for FASD. Key anticipated benefits were the potential for: increased awareness and understanding of FASD leading to better support; new insights into clinical profiles leading to greater diagnostic efficiency; facilitating international collaboration; and increased knowledge of the long-term impacts of FASD on health, social care, education, economic and criminal justice outcomes. Given the rich data infrastructure established in the UK, stakeholders expressed that a national linked FASD database could be world-leading. Common stakeholder concerns were around privacy and data-sharing and the importance of retaining space for clinical judgement alongside insights gained from quantitative analyses.</p><p><strong>Conclusions: </strong>Multi-method and multidisciplinary public and professional involvement activities demonstrated support for a national linked database for FASD in the UK. Flexible, diverse, embedded stakeholder collaboration will be essential as we establish this database.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"6 1","pages":"2381"},"PeriodicalIF":1.6,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11636589/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142819457","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Residential mobility amongst children and young people in Wales: A longitudinal study using linked administrative records. 威尔士儿童和年轻人的居住流动性:一项使用相关行政记录的纵向研究。
IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-17 eCollection Date: 2024-01-01 DOI: 10.23889/ijpds.v9i1.2398
Jo Davies, Rowena Bailey, Amy Mizen, Theordora Pouliou, Richard Fry, Rebecca Pedrick-Case, Gareth Stratton, Rhodri Johnson, Hayley Christian, Ronan Lyons, Lucy Griffiths

Background: Child poverty remains a major global concern and a child's experience of deprivation is heavily shaped by where they live and the stability of their local neighbourhood. This study examines frequencies and patterns of residential mobility in children and young people (CYP) at a population level using novel geospatial techniques to assess how often their physical environment changes and to identify geographical variations in social mobility.

Methods: We used routinely collected administrative records held in the Secure Anonymised Information Linkage (SAIL) Databank for CYP aged under 18 years living in Wales between 2012 and 2022. We calculated the Moran's I statistic to assess the magnitude of Lower layer Super Output Area (LSOA)-level geographic variation in residential mobility and used the Local Indicator of Spatial Association (LISA) to identify clusters of LSOAs where there are higher rates of residential mobility.

Results: This study included 923,531 CYP, with 58% having moved at least once during the study period. A total number of 1,209,102 house moves were recorded, 59% of which occurred between the ages of 0 and 5 years. Almost 10% of the cohort resided in five or more dwellings before the age of 18 years. In terms of area-level (LSOA) deprivation, 75% of house moves were to areas with the same or higher levels of deprivation, leaving only 25% of house moves that achieved upward social mobility. Clustering of residential mobility was identified predominantly in areas of high deprivation.

Conclusion: The findings of this study show that residential mobility is linked with socio-economic circumstances and is experienced by over half of CYP in Wales. Understanding where CYP live, their mobility patterns and which areas have high levels of influx and efflux is crucial for policymakers to generate well-informed, targeted and effective child-focused interventions.

背景:儿童贫困仍然是全球关注的一个主要问题,儿童的贫困经历在很大程度上取决于他们居住的地方和当地社区的稳定程度。本研究在人口水平上使用新颖的地理空间技术来评估儿童和年轻人(CYP)居住流动的频率和模式,以评估他们的物理环境变化的频率,并确定社会流动的地理差异。方法:我们使用常规收集的管理记录保存在安全匿名信息链接(SAIL)数据库中,用于2012年至2022年间居住在威尔士的18岁以下的CYP。我们计算了Moran’s I统计值来评估低层超级输出区域(LSOA)水平的居住流动性地理变异程度,并使用空间关联的本地指标(LISA)来识别具有较高居住流动性的LSOA集群。结果:该研究包括923,531名CYP,其中58%在研究期间至少移动过一次。总共记录了1,209,102次搬家,其中59%发生在0至5岁之间。几乎有10%的人在18岁之前住过5个或更多的房子。在地区水平(LSOA)剥夺方面,75%的房屋迁移到同等或更高剥夺水平的地区,只有25%的房屋迁移实现了向上的社会流动。居住流动性聚集主要发生在贫困程度较高的地区。结论:本研究的结果表明,住宅流动性与社会经济环境有关,威尔士一半以上的CYP都经历过这种情况。了解青少年在哪里生活、他们的流动模式以及哪些地区有大量的流入和流出,对于政策制定者制定信息充分、有针对性和有效的以儿童为重点的干预措施至关重要。
{"title":"Residential mobility amongst children and young people in Wales: A longitudinal study using linked administrative records.","authors":"Jo Davies, Rowena Bailey, Amy Mizen, Theordora Pouliou, Richard Fry, Rebecca Pedrick-Case, Gareth Stratton, Rhodri Johnson, Hayley Christian, Ronan Lyons, Lucy Griffiths","doi":"10.23889/ijpds.v9i1.2398","DOIUrl":"https://doi.org/10.23889/ijpds.v9i1.2398","url":null,"abstract":"<p><strong>Background: </strong>Child poverty remains a major global concern and a child's experience of deprivation is heavily shaped by where they live and the stability of their local neighbourhood. This study examines frequencies and patterns of residential mobility in children and young people (CYP) at a population level using novel geospatial techniques to assess how often their physical environment changes and to identify geographical variations in social mobility.</p><p><strong>Methods: </strong>We used routinely collected administrative records held in the Secure Anonymised Information Linkage (SAIL) Databank for CYP aged under 18 years living in Wales between 2012 and 2022. We calculated the Moran's I statistic to assess the magnitude of Lower layer Super Output Area (LSOA)-level geographic variation in residential mobility and used the Local Indicator of Spatial Association (LISA) to identify clusters of LSOAs where there are higher rates of residential mobility.</p><p><strong>Results: </strong>This study included 923,531 CYP, with 58% having moved at least once during the study period. A total number of 1,209,102 house moves were recorded, 59% of which occurred between the ages of 0 and 5 years. Almost 10% of the cohort resided in five or more dwellings before the age of 18 years. In terms of area-level (LSOA) deprivation, 75% of house moves were to areas with the same or higher levels of deprivation, leaving only 25% of house moves that achieved upward social mobility. Clustering of residential mobility was identified predominantly in areas of high deprivation.</p><p><strong>Conclusion: </strong>The findings of this study show that residential mobility is linked with socio-economic circumstances and is experienced by over half of CYP in Wales. Understanding where CYP live, their mobility patterns and which areas have high levels of influx and efflux is crucial for policymakers to generate well-informed, targeted and effective child-focused interventions.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"6 1","pages":"2398"},"PeriodicalIF":1.6,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11606628/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142773211","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Obesity at the age of 4-5 related to asthma diagnosis in later childhood: A longitudinal study using linked routinely collected data from Wales. 4-5岁肥胖与儿童后期哮喘诊断相关:一项使用威尔士常规收集数据的纵向研究。
IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-06-26 eCollection Date: 2024-01-01 DOI: 10.23889/ijpds.v9i1.2374
Waleed Mohamed Abdeldayem, Jo Davies, Lucy Jane Griffiths

Introduction: Obesity and asthma are two of the most common childhood conditions and their prevalence have increased over the last decades. Several cross-sectional studies provide strong evidence for a positive association between these two conditions. However, few longitudinal studies have examined the temporal relationship between them.

Objective: To examine the relationship between body mass index (BMI) at school starting age and the risk of developing bronchial asthma later in childhood.

Methods: We used anthropometric measurements of children aged 4 to 5 years, obtained as part of a national surveillance programme in Wales, linked to multiple population-level longitudinal administrative and clinical datasets within a trusted research environment provided by the Secure Anonymised Information Linkage (SAIL) databank to examine whether obesity at age 4 to 5 years was associated with increased risk of having a recorded diagnosis of asthma during a nine year follow-up period.

Results: Out of 22,790 children included in the study, 7% had a recorded diagnosis of asthma during the nine years following anthropometric measurement. Children who were classified as obese (Body Mass Index [BMI] Z-score ≥98th Centile) had a 41% increased risk of having a recorded diagnosis of asthma (adjusted odds ratio [aOR]: 1.41; 95% confidence interval [CI]: 1.17-1.7). Females were 26% less likely to have a recorded diagnosis of asthma after adjusting for weight status and deprivation index (aOR: 0.74; 95% CI: 0.67-0.82).

Conclusion: Obesity in children aged 4 to 5 years carries an increased risk of developing asthma. Anthropometric measurements obtained through standardised population-level surveillance programmes enable important research which would not be possible otherwise and expanding these programmes to older age groups is recommended. Lifestyle interventions aimed at weight loss may have a role in decreasing the risk of developing asthma.

肥胖症和哮喘是两种最常见的儿童疾病,其患病率在过去几十年中有所增加。一些横断面研究为这两种情况之间的正相关提供了强有力的证据。然而,很少有纵向研究考察了它们之间的时间关系。目的:探讨儿童入学年龄体重指数(BMI)与儿童期支气管哮喘发病风险的关系。方法:我们使用4 - 5岁儿童的人体测量数据,作为威尔士国家监测计划的一部分,与安全匿名信息链接(SAIL)数据库提供的可信研究环境中的多个人口水平纵向管理和临床数据集相关联,以检查4 - 5岁肥胖是否与9年随访期间记录的哮喘诊断风险增加有关。结果:在研究中纳入的22,790名儿童中,7%在人体测量测量后的9年内被诊断为哮喘。被归类为肥胖(身体质量指数[BMI] Z-score≥98百分位)的儿童被记录为哮喘的风险增加41%(校正优势比[aOR]: 1.41;95%置信区间[CI]: 1.17-1.7)。在调整体重状况和剥夺指数后,女性有哮喘诊断记录的可能性降低26% (aOR: 0.74;95% ci: 0.67-0.82)。结论:4 - 5岁儿童肥胖会增加患哮喘的风险。通过标准化人口水平监测规划获得的人体测量数据使重要的研究成为可能,否则就不可能进行这些研究,并建议将这些规划扩大到年龄较大的群体。以减肥为目标的生活方式干预可能对降低患哮喘的风险有一定作用。
{"title":"Obesity at the age of 4-5 related to asthma diagnosis in later childhood: A longitudinal study using linked routinely collected data from Wales.","authors":"Waleed Mohamed Abdeldayem, Jo Davies, Lucy Jane Griffiths","doi":"10.23889/ijpds.v9i1.2374","DOIUrl":"10.23889/ijpds.v9i1.2374","url":null,"abstract":"<p><strong>Introduction: </strong>Obesity and asthma are two of the most common childhood conditions and their prevalence have increased over the last decades. Several cross-sectional studies provide strong evidence for a positive association between these two conditions. However, few longitudinal studies have examined the temporal relationship between them.</p><p><strong>Objective: </strong>To examine the relationship between body mass index (BMI) at school starting age and the risk of developing bronchial asthma later in childhood.</p><p><strong>Methods: </strong>We used anthropometric measurements of children aged 4 to 5 years, obtained as part of a national surveillance programme in Wales, linked to multiple population-level longitudinal administrative and clinical datasets within a trusted research environment provided by the Secure Anonymised Information Linkage (SAIL) databank to examine whether obesity at age 4 to 5 years was associated with increased risk of having a recorded diagnosis of asthma during a nine year follow-up period.</p><p><strong>Results: </strong>Out of 22,790 children included in the study, 7% had a recorded diagnosis of asthma during the nine years following anthropometric measurement. Children who were classified as obese (Body Mass Index [BMI] Z-score ≥98<sup>th</sup> Centile) had a 41% increased risk of having a recorded diagnosis of asthma (adjusted odds ratio [aOR]: 1.41; 95% confidence interval [CI]: 1.17-1.7). Females were 26% less likely to have a recorded diagnosis of asthma after adjusting for weight status and deprivation index (aOR: 0.74; 95% CI: 0.67-0.82).</p><p><strong>Conclusion: </strong>Obesity in children aged 4 to 5 years carries an increased risk of developing asthma. Anthropometric measurements obtained through standardised population-level surveillance programmes enable important research which would not be possible otherwise and expanding these programmes to older age groups is recommended. Lifestyle interventions aimed at weight loss may have a role in decreasing the risk of developing asthma.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"9 1","pages":"2374"},"PeriodicalIF":1.6,"publicationDate":"2024-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11636590/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142819442","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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International Journal of Population Data Science
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