Catálogo de publicaciones - revistas

<jats:p>ObjectiveA recently established data research network identified the need to address Inclusion, Diversity, Equity, and Accessibility and established a team committed to IDEA informed change. The Team identifies, develops, and implements IDEA strategies in distributed research network. We will share the process of establishing this Team and outline identified coordinated opportunities moving forward.&#x0D; ApproachAdministrative data and analyses are not neutral. Colonialism, racism, gender discrimination, ableism, and other forms of oppression have shaped the data that are available and the research processes that are used to analyze and evaluate data. It is imperative that health data research adopts and develops methods that embed IDEA. An informal survey of a health data research network identified four areas for action including capacity building, culture shifts, information sharing, and coordinated development of policies, practices, and tools. A multi-regional team was established to move forward with this work with an emphasis on operations and research practices.&#x0D; ResultsIn the fall of 2021 IDEA Team members were recruited from data centres across the network, including IDEA professionals, researchers, data collection and curation specialists, human resource professionals, and public/patient engagement specialists. The first IDEA Team meetings focused on team buildings and building shared purpose by shaping the Terms of Reference and creating principles for working together. Next steps will include an environmental audit to assess network capacity and a consensus oriented decision-making process to identify priorities. The Team includes over 20 members with a broad range of knowledge and expertise, making facilitation a key operational component. Establishing a baseline of knowledge and defining priorities will encompass the first year of the Teams work, navigating the distinct needs of a distributed network, the diverse needs of data centres, and the breadth of data that flows through the network.&#x0D; ConclusionThis multi-regional inter-disciplinary team is crucial to adopting, developing and embedding IDEA in a distributed data network and could serve as a model for other data research organizations. The Team will work towards capacity building, creating an internal culture shift and coordinating the development of new tools and resources.</jats:p>

<jats:p>ObjectivesEducation outcomes predict life chances; however disabilities and concurrent learning difficulties are often barriers to school performance. Low educational achievement is also linked with socio-economic deprivation. We aimed to quantify the association of these factors with education outcomes by ages 12 and 17 for children in Wales (UK).&#x0D; ApproachWe linked health, socio-economic and education data for children born after 1997 in Wales, registered with any one of 17 isolated congenital anomalies. Children were included if they had known education outcomes at ages 12 (n=9,223) and 17 (n=4524). A reference population comprised children born similarly but without anomalies, also having education records at 12 (n=261,827) and 17 (n=4,524).&#x0D; Multinomial logistic regressions determined the likelihood of attainment in compulsory subjects by age 12 and of attaining five GCSE qualifications by age 17. We adjusted for socio-economic status by using free school meal eligibility (household deprivation) and area-based indices of deprivation.&#x0D; ResultsWe identified 14 and 11 isolated anomalies that reduced the likelihood of achieving educational standards by ages 12 and 17 respectively. Educational achievements were lower for children with Down syndrome, Turner syndrome, hydrocephalus and limb reduction defects, particularly at age 12, indicating that children with anomalies may catch-up with their peers. While children with anomalies were less likely to achieve five GCSEs by age 17, there was no difference in the grades of those who did so. Deprivation, particularly at household level, further reduced the likelihood of education success. At age 17, household deprivation reduced 3-fold the odds of achieving any five GCSEs grades A*-C.&#x0D; ConclusionsChildren with congenital anomalies from the most deprived communities and households are at particular risk of low education achievement. To realise their potential, these children should be identified from medical records at an early age and offered targeted educational support as soon as possible and at every opportunity.</jats:p>

<jats:p>ObjectiveTo examine differences in youth justice (YJ) system contact patterns, early life characteristics, child protection system contact, and adolescent mental health outcomes among young people who have early, late or no contact with the YJ system.&#x0D; ApproachData were from the Better Evidence Better Outcomes Linked Data (BEBOLD) platform including children in South Australia born 1991-2002, followed from birth to age 18 (n=249,995). Young people were categorised into three groups: 1) those who had their first YJ supervision before age 14, i.e., those who had ‘early’ contact; 2) those who had their first YJ supervision at age 14 or older, i.e., those who had ‘late’ contact; and 3) those who had no contact with the YJ system by age 18.&#x0D; ResultsOf the 249,995 children born 1991-2002, 4,097 (1.6%) had YJ contact. Of these, 667 (16.3%) had their first YJ supervision early, and 3,430 (83.7%) had their first YJ supervision late. Compared to the late contact group, young people with early contact had more serious YJ contact patterns (e.g., 91% versus 59% ever experienced custodial supervision). Compared to the late contact and no YJ contact groups, the early contact group were: more disadvantaged at birth; had more serious child protection contact by age 10; and a higher proportion had experienced at least one mental health-related hospitalisation from ages 12-18.&#x0D; ConclusionThis analysis demonstrates the complex circumstances that precede and co-occur with YJ involvement. Early life adversity and poor adolescent mental health were more pronounced for young people who had early contact with YJ, compared to those who had late contact. This points to the need for investment in early supports.</jats:p>

<jats:p>ObjectivesIn the Western Cape, South Africa, public-sector individual-level routine data are consolidated from multiple non-EMR sources through the Provincial Health Data Centre (PHDC).  This enables the description of temporal changes in population-wide antenatal HIV sero-prevalence. We evaluated the validity of these data compared to aggregated program data and sentinel surveys.&#x0D; ApproachWe conducted a retrospective cohort analysis of all pregnancies consolidated in the PHDC from January 2011 to December 2020. Evidence of antenatal and HIV care from electronic platforms (each with its own multi-source phenotype algorithm) were linked using a unique patient identifier. HIV prevalence estimates were triangulated with available sentinel national and provincial antenatal survey estimates as well as aggregated programmatic data from registers as recorded in the District Health Information System. Provincial, district-level and age-group HIV prevalence estimates were compared between data systems using correlation coefficients, absolute differences and trend analysis.&#x0D; ResultsIn total, 982,914 pregnancies were ascertained with a median maternal age of 26.9 years. Between 2011–2013, PHDC HIV prevalence estimates were widely disparate from aggregate and survey data (due to incomplete electronic data) whereas, from 2014 onwards, estimates were more closely correlated to aggregate data estimates (r=0.83; p=0.02) with an average absolute prevalence difference of 0.97%. In keeping with survey and aggregate data trends, PHDC data show a relatively stable provincial HIV prevalence from 17.0 (95%CI 16.8%–17.2%) in 2015 to 18.9% (95%CI 18.7–19.1%) in 2020. The highest HIV prevalence was in the Cape Metro district (20.6%; 95%CI 20.4%–20.9%). Prevalence estimates by age group were comparable between sentinel surveys and PHDC from 2014 onwards with an average absolute prevalence difference of 1.6%.&#x0D; ConclusionThis study is the first to compare sentinel sero-prevalence surveys with both register-based aggregate data and consolidated individuated administrative data. We show that in this setting linked individuated data may be reliably used for HIV surveillance and provide more granular estimates with greater efficiency.</jats:p>

<jats:p>ObjectivesIn Canada physician payment systems and associated billing data vary across provinces. We used linked billing data to develop comparable measures of family physician (FP) service volume, continuity, and comprehensiveness in each of four provinces, with the goal of describing changing patterns over time, relevant to workforce planning policy.&#x0D; ApproachWe accessed linked population and physician registry data, vital statistics, physician billing data, hospital and emergency department records, and (where available) laboratory and prescription drug records in four Canadian provinces from 1996/7 to 2017/8. We tracked changes in primary care physician service volume (patient visits), continuity, and comprehensiveness over two decades, and explored the impacts of career stage and graduation cohort on patterns observed. We also quantified changes in the volume of services that required FP coordination, review, administration, and/or follow-up, reporting changes in service volume per-capita, per community-based family physician and per physician visit.&#x0D; ResultsVisit volume and continuity per provider fell over time in the four provinces examined.  Visits increased with years in practice until mid-to-late-career and declined into end-of-career. We found no relationship between graduation cohort and practice volume, continuity, or comprehensiveness of care. Over this time period, the number of FPs per-capita has grown, but the number in comprehensive, community-based practice has remained constant. While primary care visits have declined, the number of prescriptions, lab tests, emergency department visits, and specialist visits per capita have all increased. When expressed per community-based FP, and particularly per community-based FP patient visit, the increases in workload range from 36.1% for lab tests to 55.0% for ED follow-up. Increases in service volume are greatest among patients ages 80 and older, a rapidly-growing population segment.&#x0D; ConclusionLinked data capturing changes in practice patterns and workload suggest that even with an increasing per-capita supply of family physicians, additional resources will be needed to ensure all patients can access comprehensive primary care. Information on the various roles family physicians fill and demographic change will strengthen workforce planning.</jats:p>

<jats:p>ObjectivesIndigenous children in Canada, including Metis children, are taken into care by the child welfare system at a disproportionately high rate. The objective of this study was to explore factors related to having a child taken into care from Metis families in Manitoba, and specifically from Metis mothers experiencing incarceration.&#x0D; ApproachThe cohort comprised all mother-child dyads in Manitoba, Canada with live births between Jan 1, 2004-Dec 31, 2014. The factors we examined included the mother experiencing incarceration after the birth of a child, having prior interaction with the legal system, socioeconomic status, maternal age, and mother’s mental health disorder diagnoses. Using the Cox proportional hazards model, unadjusted and adjusted hazard ratios describing the risk of a child being taken into care by five years of age were generated for three exposure groups: no incarceration, prenatal incarceration, and postnatal incarceration.&#x0D; ResultsBefore adjustment, mothers experiencing incarceration after the birth of a child had greater risk of having a child taken into care (HR 9.3; 95% CI 7.7-11.3) compared with women who did not experience incarceration; after adjusting for measured confounders, their elevated risk dropped to aHR 6.1 (5.0-7.4). After further adjustment for prior custody in the prenatal period, mothers experiencing incarceration had 3.8 times the risk (3.0-5.0), and after adjusting for maternal mental health disorders, this dropped to 2.6 times the risk (2.0-3.4). In fully adjusted models, other factors associated with having a child taken into care included receiving diagnoses for a substance use disorder (aHR 2.6; 2.1-3.2) and for psychosis (aHR 2.4; 1.4-4.1) during the five years prior to the child’s birth.&#x0D; ConclusionDue to colonialism, Metis women experience high levels of social and mental health complexity, placing their children at increased risk of being taken into care. Responding to the Truth and Reconciliation Commission’s Calls to Action to redress the harms of colonialism is necessary to support Metis children’s health and well-being.</jats:p>

<jats:p>ObjectivesAlthough opioid prescribing and harms have increased in Australia, there is a lack of population-level evidence about the drivers of long-term opioid use, dependence and other harms. This study aims to profile the POPPY II cohort, with respect to sociodemographic and clinical health characteristics and patterns of opioid initiation.&#x0D; ApproachThe POPPY II cohort includes adult residents (≥18 years) in NSW who were initiated on prescribed opioids subsidised through Australia’s Pharmaceutical Benefits Scheme for any period between 1st July 2003 and 31st December 2018. The cohort has been linked to nine other datasets containing information on socio-demographic and clinical characteristics, health service use, and adverse outcomes.&#x0D; ResultsThere were 3,569,433 people in the cohort. One in four people were aged ≥65 years at the time of opioid initiation (26.8%) and half were female (52.7%). About 71% resided in a major city. Approximately 6% had evidence of being treated for cancer in the year prior to opioid initiation (5.8%). In the 3 months prior to cohort entry, 27% used an analgesic medicine and 21% used a psychotropic medicine. Less than a third initiated on a strong opioid (22.2%) and the most commonly initiated opioid was paracetamol/codeine (61.3%).&#x0D; ConclusionThe POPPY II study is the largest post-marketing surveillance study of prescribed opioids in Australia, and one of the largest studies worldwide. Understanding the characteristics of the cohort will inform future work aimed at generating robust evidence of the long-terms patterns and outcomes of prescribed opioid use in the Australian community.</jats:p>

<jats:p>ObjectiveIn response to the COVID-19 pandemic, Sunnybrook Health Sciences Centre launched the first virtual emergency department (VED) in Toronto, Ontario. The objective of this pilot project was to leverage linked administrative data to describe the healthcare utilization of VED patients compared to matched patients who attended an ED in person.&#x0D; ApproachEvaluation of the VED program was supported by the ICES Applied Health Research Question Program, which is funded by the Ontario Ministry of Health to answer questions directly related to Ontario healthcare policy, planning, or practice. VED visit records from December 2020 to May 2021 were linked with Ontario administrative data. VED patients with low acuity complaints were matched 1:1 with in-person ED comparators according to visit date, presenting complaint, and a propensity score that incorporated age, sex, comorbidities, and other important potential confounders. The primary outcomes were healthcare utilization within 7 days and all-cause mortality within 30 days.&#x0D; ResultsOf the 609 eligible patients discharged from the VED, 600 (98.5%) were successfully matched to a comparator. Mean (SD) age was 43.0 (21.1) and 64.1% were female. In-person ED revisits and hospitalizations were similar for VED and comparator patients at 72 hours (ED: 12.1% vs. 11.3%; Δ 0.8%, 95%: -2.8, 4.5%; hospitalization:  1.2% vs. 1.5%; Δ 0.3%, 95%: -0.7, 1.4%,) and 7 days (ED: 16.1% vs. 14.4%; Δ 1.7, 95%: -2.4, 5.7%; hospitalization: 1.7% vs. 1.8%; Δ 0.2%, 95%: -0.1, 1.4%) following the index visit. The number of patients visiting a primary care provider within 7 days was also similar between groups (36.7% vs. 32.4%; Δ 4.3, 95%: -1.1, 9.8%). No patients died within 30 days.&#x0D; Conclusion/ImplicationsVED patients and their matched comparators had similar healthcare utilization in the 7 days following their index ED visit. Methodology from this study will inform a province-wide evaluation of VED programs across Ontario.</jats:p>

<jats:p>Objective1 in 8 young people in the United Kingdom are estimated to have a diagnosable mental health condition. Prevalence is increasing over time, many are untreated, and need is not evenly distributed across the population. We aimed to investigate trends in children’s mental health prescribing and referrals to specialist outpatient services.&#x0D; ApproachWe linked individual-level healthcare administrative records on community prescribing and referrals to outpatient Child and Adolescent Mental Health Services (CAMHS). The study cohort included all children aged 2 through 17 in the NHS Grampian Health Board region from 2015 to 2021 (average annual population circa 100,000) with a mental health prescription or CAMHS referral.&#x0D; We measured prevalence of mental health prescribing and referrals to CAMHS over time. We investigated demographic and socioeconomic differences, including comparison of rates by age, sex, and residential area deprivation. We also investigated socioeconomic and demographic differences in referral acceptance and rejection.&#x0D; ResultsPrescriptions for mental health drugs have risen 40%: from 5,000 per month in 2015 to 7,000 in 2021. 75% of prescriptions to primary schoolers are to boys, mostly for attention deficit hyperactivity disorder medications. Prescriptions to girls rise during secondary school, mostly for anti-depressants. Prescribing rates are 2.6-fold higher in the most versus least deprived areas.&#x0D; Referrals to CAMHS have risen 20% over the study period, and the proportion of referrals rejected has increased from 18% to 31% – leaving the number of children accepted to specialist care stable. Boys are referred twice as often at younger ages, while girls’ referrals spike during puberty. Since 2015, boys have been referred less and rejected more, with girls now making up 61% of those treated. Referral rates are two-fold higher in the most versus least deprived areas.&#x0D; ConclusionsBoth mental health prescribing and referrals to CAMHS have increased in this population, but the CAMHS service size remained fixed. Presentation and treatment patterns vary dramatically by age and sex, and socioeconomic inequalities are clear and persistent.</jats:p>

<jats:p>The Janssen and Newfoundland and Labrador Health Innovation Partnership (JANL-HIP) was established to carry out Real-World Evidence (RWE) projects to generate evidence about disease pathways, healthcare delivery, the effects of clinical interventions. Doing so will support and influence clinical decision-making in Newfoundland and Labrador (NL). This case study describes the foundational elements necessary for a~real-world evidence~generation project in NL and may provide learning for the effective execution of real-world studies in other jurisdictions. It uses an ongoing project in psoriatic disease in NL to illustrate the partnership and the benefits of RWE studies. Ultimately, the JANL-HIP RWE project aims to inform decisions that will drive improvements in health outcomes, system delivery, and policy mutually beneficial to health ecosystem stakeholders.</jats:p>