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Environmental factors amplified by climate change contribute significantly to the global burden of disease, disproportionately impacting vulnerable populations, such as individuals with rare diseases. Researchers require innovative, dynamic data linkage methods to enable the development of risk prediction models, particularly for diseases like vasculitis with unknown aetiology but potential environmental triggers. In response, we present the Semantic Environmental and Rare Disease Data Integration Framework (SERDIF). SERDIF was evaluated with researchers studying climate-related health hazards of vasculitis disease activity across European countries (NP1 = 10, NP2 = 17, NP3 = 23). Usability metrics consistently improved, indicating SERDIF's effectiveness in linking complex environmental and health datasets. Furthermore, SERDIF-enabled epidemiologists to study environmental factors in a pregnancy cohort in Lombardy, showcasing its versatility beyond rare diseases. This framework offers for the first time a user-friendly, FAIR-compliant design for environment-health data linkage with export capabilities enabling data analysis to mitigate health risks posed by climate change. [ABSTRACT FROM AUTHOR]

Background and Objectives The coronavirus disease 2019 (COVID-19) pandemic severely disrupted hospice care, yet there is little research regarding how widespread disruptions affected clinician and family decision-making. We aimed to understand how the pandemic affected structures, processes, and outcomes of end-of-life care. Research Design and Methods Retrospective narrative chart review of electronic health records of 61 patients referred and admitted to hospice from 3 New York City geriatrics practices who died between March 1, 2020, and March 31, 2021. We linked longitudinal, unstructured medical, and hospice electronic health record notes to create a real-time, multiperspective trajectory of patients' interactions with providers using directed content analysis. Results Most patients had dementia and were enrolled in hospice for 11 days. Care processes were shaped by structural factors (staffing, supplies, and governmental/institutional policies), and outcomes were prioritized by care teams and families (protecting safety, maintaining high-touch care, honoring patient values, and supporting patients emotionally and spiritually). Processes used to achieve these outcomes were decision-making, care delivery, supporting a "good death," and emotional and spiritual support. Discussion and Implications Care processes were negotiated throughout the end of life, with clinicians and families making in-the-moment decisions. Some adaptations were effective but also placed extraordinary pressure on paid and family caregivers. Healthcare teams' and families' goals to meet patients' end-of-life priorities can be supported by ongoing assessment of patient goals and process changes needed to support them, stronger structural supports for paid and family caregivers, incentivizing relationships across primary care and hospice teams, and extending social work and spiritual care. [ABSTRACT FROM AUTHOR]

The use of data derived from electronic health records (EHRs) to describe racial and ethnic health disparities is increasingly common, but there are challenges. While the number of patients covered by EHRs can be quite large, such patients may not be representative of a source population. One way to evaluate the extent of this limitation is by linking EHRs to an external source, in this case with the American Community Survey (ACS). Relying on a stratified random sample of about 200,000 patient records from a large, public, integrated health delivery system in North Carolina (2016–2019), we assess linkages to restricted ACS microdata (2001–2017) by race and ethnicity to understand the strengths and weaknesses of EHR-derived data for describing disparities. The results in this research note suggest that Black–White comparisons will benefit from standard adjustments (e.g., weighting procedures) but that misestimation of health disparities may arise for Hispanic patients because of differential coverage rates for this group. [ABSTRACT FROM AUTHOR]

Objective: To identify factors associated with receiving electroconvulsive therapy (ECT) for serious psychiatric conditions. Methods: Retrospective observational study using hospital administrative data linked with death registrations and outpatient mental health data in New South Wales (NSW), Australia. The cohort included patients admitted with a primary psychiatric diagnosis between 2013 and 2022. The outcome measure was receipt of ECT. Results: Of 94,950 patients, 3465 (3.6%) received ECT. The likelihood of receiving ECT was higher in older (hazard ratio [HR] = 1.03), female (HR = 1.24) patients. Compared to depression, patients with schizophrenia/schizoaffective disorder (HR = 0.79), schizophrenia-related disorders (HR = 0.37), mania (HR = 0.64) and other mood disorders (HR = 0.45) had lower odds of receiving ECT. Patients with depression and one other serious psychiatric condition had higher odds of receiving ECT than depression alone. Bipolar disorder likelihood of ECT did not differ from depression. A higher number of mental health outpatient visits in the prior year and an involuntary index admission with depression were also associated with receiving ECT. Likelihood of receiving ECT increased with year of admission (HR = 1.32), private patient status (HR = 2.06), higher socioeconomic status (HR = 1.09) and being married (HR = 1.25). Conclusions: ECT use for depression and bipolar disorder in NSW aligns with clinical national guidelines. Patients with schizophrenia/schizoaffective, schizophrenia-related disorders, mania and other mood disorders had lower likelihood of ECT than depression, despite ECT being recommended by clinical guidelines for these diagnoses. Variations in ECT were strongly associated with healthcare access, with private patients twice as likely to receive ECT than their public counterparts, suggesting a need to explore ECT accessibility. [ABSTRACT FROM AUTHOR]

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Background: Studies that assess cognition prospectively and study in detail anxiety history in the participants' medical records within the context of brain aging and Alzheimer's disease are limited. Objective: To examine the associations of anxiety and unspecified emotional distress (UED) acquired throughout a person's life with prospectively collected cognitive outcomes. Methods: Mayo Clinic Study of Aging participants who were cognitively unimpaired at baseline were included. Anxiety and UED data were abstracted from the medical record using the Rochester Epidemiology Project (REP) resources and were run separately as predictors in our models. The data were analyzed using Cox proportional hazards models for the outcomes of incident mild cognitive impairment (MCI) and dementia and using linear mixed effects models for the outcomes of global and domain specific cognitive z-scores and included key covariates. Results: The study sample (n = 1,808) had a mean (standard deviation) age of 74.5 (7.3) years and 51.4% were male. Anxiety was associated with increased risk of MCI and dementia and was associated with lower baseline cognitive z-scores and accelerated decline over time in the global, memory, and attention domains. UED was associated with faster decline in all domains except visuospatial but did not show evidence of association with incident cognitive outcomes. These results varied by medication use and timing of anxiety. Conclusions: Anxiety and UED both showed inverse associations with cognition. Utilization of anxiety and UED data from across the life course, as available, from the REP system adds robustness to our results. [ABSTRACT FROM AUTHOR]

Background: Administrative healthcare databases, such as Medicare, are increasingly used to identify groups at risk of a crash. However, they only contain information on crash-related injuries, not all crashes. If the driver characteristics associated with crash and crash-related injury differ, conflating the two may result in ineffective or imprecise policy interventions. Methods: We linked 10 years (2008–2017) of Medicare claims to New Jersey police crash reports to compare the demographics, clinical diagnoses, and prescription drug dispensings for crash-involved drivers ≥ 68 years with a police-reported crash to those with a claim for a crash-related injury. We calculated standardized mean differences to compare characteristics between groups. Results: Crash-involved drivers with a Medicare claim for an injury were more likely than those with a police-reported crash to be female (62.4% vs. 51.8%, standardized mean difference [SMD] = 0.30), had more clinical diagnoses including Alzheimer's disease and related dementias (13.0% vs. 9.2%, SMD = 0.20) and rheumatoid arthritis/osteoarthritis (69.5% vs 61.4%, SMD = 0.20), and a higher rate of dispensing for opioids (33.8% vs 27.6%, SMD = 0.18) and antiepileptics (12.9% vs 9.6%, SMD = 0.14) prior to the crash. Despite documented inconsistencies in coding practices, findings were robust when restricted to claims indicating the injured party was the driver or was left unspecified. Conclusions: To identify effective mechanisms for reducing morbidity and mortality from crashes, researchers should consider augmenting administrative datasets with information from police crash reports, and vice versa. When those data are not available, we caution researchers and policymakers against the tendency to conflate crash and crash-related injury when interpreting their findings. [ABSTRACT FROM AUTHOR]

PurposeMethodsResultsConclusionsTo determine the incidence and clinical characteristics of ocular adnexaltumors in Olmsted County, Minnesota.Retrospective population-based cohort study of all patients residing in Olmsted County, Minnesota diagnosed with any ocular tumor from January 1, 2006, to December 31, 2015. The medical records of all patients with an incident diagnosis of any ocular adnexal tumor were reviewed using the Rochester Epidemiology Project medical record linkage system for patient demographics, tumor type, and histopathologic confirmation. Incidence rates were calculated per 100,000 person-years. Poisson regression analysis was used to analyze changes in incidence over time.There were 717 patients diagnosed with ocular adnexal tumors during the 10-year study period, yielding an age- and sex-adjusted incidence rate of 59.7 per 100,000 (95% CI 55.4 to 64.0, p < 0.05) per year. In total, 764 tumors were diagnosed. Most tumors were eyelid lesions (N = 756, 99.0%), which were mostly benign (N = 512, 67.8%) with epidermal inclusion cysts (N = 275, 36.0%), hidrocystoma (N = 70, 9.2%), and eyelid sebaceous cysts (N = 46, 6.1%) accounting for the majority. Malignant eyelid lesions (N = 244, 31.9%) were relatively common with basal cell carcinoma (N = 184, 24.1%) and squamous cell carcinoma (N = 49, 6.4%) having the highest frequencies. Orbital tumors (N = 8, 1.0%) were infrequent. Of the orbital tumors, the most common was lacrimal gland adenoidcystic carcinoma (N = 2, 25.0%).In a population-based setting, most ocular adnexal tumors were benign eyelid lesions. Understanding the epidemiology of ocular adnexal tumors is important to aid providers in diagnosing and facilitating appropriate referrals of potentially vision- and life-threatening malignancies. [ABSTRACT FROM AUTHOR]

Background: Although guidelines recommend guideline‐directed medical therapy (GDMT) for patients with acute coronary syndrome (ACS), implementation is limited in clinical practice. Aim: To assess the level of GDMT in ACS patients after discharge who attended cardiac rehabilitation (CR) programs and association with clinical outcomes. Method: A cross‐sectional study was conducted in 13 rural and 10 metropolitan CR programs via all modes of delivery (face‐to‐face, telephone, or general practice‐hybrid) operating in South Australia, Australia. ACS patients were included if they were ≥18 years of age and were referred and attended CR programs with medication details recorded in their hospital discharge summary. GDMT was assessed according to the Australian clinical guidelines for the management of acute coronary syndromes 2016. Prescription of all the four recommended medication classes was considered optimal. Logistic regression and χ2 test were used for association. Ethical approval was granted by the South Australian Department for Health and Wellbeing Human Research Ethics Committee (Reference No. HREC/15/SAH/63) and the Northern Territory Department of Health Human Research Ethics Committee (Reference No. HREC 2015‐2484) which included a waiver of consent per the National Statement on Ethical Conduct in Human Research and the study conforms with the Good Clinical Practice Guidelines. Results: Of the 1229 patients included, 74.6% were male and 41.1% had acute myocardial infarction. Only 39.7% of patients received optimal prescription. Prescription of any three or two medication class combinations occurred for 78.3% and 94.1% of patients, respectively. Optimal GDMT was associated with fewer hospital admissions (odds ratio = 0.647, 95% confidence interval 0.424–0.987, p = 0.043) with no significant gender association. Women were less likely to be prescribed angiotensin converting enzyme inhibitors (p = 0.003), angiotensin receptor blockers (p = 0.007), statins (p = 0.005), and any two (p < 0.001) and three combinations (p = 0.023) of medication classes. Conclusion: GDMT prescription was suboptimal in patients with ACS before attendance at CR. Primary care and CR clinicians have missed an opportunity to implement best practice guideline recommendations, particularly for women. [ABSTRACT FROM AUTHOR]

Simple Summary: Large datasets concerning childhood cancers are rare. Therefore, it is important to fully exploit all available data, which are distributed over several resources, including biomaterials, images, clinical trials, and registries. With privacy-preserving record linkage (PPRL), datasets can be merged, without disclosing the patients' identities. Although PPRL is already implemented or described in various settings, use case descriptions are fragmented and incomplete. The present paper gives an overview of current and future use cases of PPRL in childhood cancer. We screened the literature, projects, and trial protocols, analysed a hypothetical patient journey, and discussed use cases with experts. All the identified use cases were structured along six key dimensions. We conclude that PPRL is a key concept in childhood cancer. Therefore, PPRL strategies should already be considered when starting research projects, to avoid distributed data silos, to maximise the knowledge derived from collected data, and, ultimately, to improve outcomes for children with cancer. Large datasets in paediatric oncology are inherently rare. Therefore, it is paramount to fully exploit all available data, which are distributed over several resources, including biomaterials, images, clinical trials, and registries. With privacy-preserving record linkage (PPRL), personalised or pseudonymised datasets can be merged, without disclosing the patients' identities. Although PPRL is implemented in various settings, use case descriptions are currently fragmented and incomplete. The present paper provides a comprehensive overview of current and future use cases for PPRL in paediatric oncology. We analysed the literature, projects, and trial protocols, identified use cases along a hypothetical patient journey, and discussed use cases with paediatric oncology experts. To structure PPRL use cases, we defined six key dimensions: distributed personalised records, pseudonymisation, distributed pseudonymised records, record linkage, linked data, and data analysis. Selected use cases were described (a) per dimension and (b) on a multi-dimensional level. While focusing on paediatric oncology, most aspects are also applicable to other (particularly rare) diseases. We conclude that PPRL is a key concept in paediatric oncology. Therefore, PPRL strategies should already be considered when starting research projects, to avoid distributed data silos, to maximise the knowledge derived from collected data, and, ultimately, to improve outcomes for children with cancer. [ABSTRACT FROM AUTHOR]

The article evaluates the implementation of opt-out HIV screening in the University of Miami Health Tower Emergency Department to enhance HIV detection and linkage to care. Topics discussed include the effectiveness of opt-out testing in increasing screening rates, the demographic disparities observed in HIV-positive results, and the integration of opt-out testing into routine emergency department workflows.

Our aim was to estimate associations of adolescent dietary patterns and meal habits with hypertensive disorders of pregnancy (HDP) and preterm birth. We used data from a prospective cohort study (Norwegian Young-HUNT1) where dietary information was collected during adolescence and pregnancy outcomes were obtained through record linkage to the Norwegian national birth registry. The outcomes were HDP, hypertension, pre-eclampsia/eclampsia, and preterm birth in the first pregnancy and in any pregnancy. Diet was self-reported from validated questionnaires, and exposures were dietary indexes (healthy; unhealthy; fruit and vegetable; fibre index) and meal habits. Recruitment took place in schools. Eligible participants were females aged 13–19 years at the time of dietary assessment with a subsequent singleton pregnancy (n 3622). Women who reported a higher fibre intake in adolescence had a lower risk of pre-eclampsia in the first pregnancy (Relative Risk: 0·84; 95 % CI 0·7, 1·0), although this was weaker in sensitivity analyses. Regular meal habits in mid-adolescence (aged 13–15 years), particularly breakfast and lunch, were weakly associated with a lower risk of hypertension in pregnancy. Our results are the first to indicate an association between aspects of diet and dietary behaviour in mid-adolescence and subsequent HDP. More evidence is needed from larger studies to replicate the results and from alternative study designs to disentangle causality. [ABSTRACT FROM AUTHOR]

Cumulative comorbidity of mental disorders is common, but the extent and patterns of comorbid psychopathology in childhood are not well established. The current study aimed to elucidate the emergent patterns of cumulative mental disorder comorbidity in children using network analysis of diagnoses recorded between birth and age 12 years. Participants were 90,269 children (mean age 12.7 years; 51.8% male) within the New South Wales Child Development Study (NSW-CDS)—a longitudinal record-linkage cohort study of Australian children born in NSW between 2002 and 2005. Binary indicators for eight types of mental disorder were derived from administrative health records. Patterns of conditional association between mental disorders were assessed utilising network analysis. Of 90,269 children, 2268 (2.5%) had at least one mental disorder by age 12 years; of the 2268 children who had at least one mental disorder by age 12 years, 461 (20.3%) were diagnosed with two or more different disorders out of the eight disorder types included in analyses. All disorders were either directly or indirectly interconnected, with childhood affective and emotional disorders and developmental disorders being most central to the network overall. Mental disorder nodes aggregated weakly (modularity = 0.185) into two communities, representative of internalising and externalising disorders, and neurodevelopmental and sleep disorders. Considerable sex differences in the structure of the mental disorder comorbidity networks were also observed. Developmental and childhood affective and emotional disorders appear to be key to mental disorder comorbidity in childhood, potentially reflecting that these disorders share symptoms in common with many other disorders. [ABSTRACT FROM AUTHOR]

Background: The use of unique national personal identification numbers (PIN) for linkage of medical records across health facilities and population-based studies is limited in sub-Saharan Africa (SSA) countries. The disintegration of healthcare research with different participant identifiers creates methodological challenges in linking data from multiple sources to answer a diverse range of policy-relevant, clinical, administrative, and research questions. This commentary aims to provide recommendations for improved linkage of health services data in SSA for healthcare research. Main text: Linkage of health services data is a complex process that requires health system thinking, multisectoral collaboration between the public and private sectors, and long-term investments. We recommend transitioning from paper-based healthcare data collection and storage systems, at health facility and population levels, to the use of electronic computer-assisted systems and a focus on improved data quality. SSA countries implementing this transition will benefit from additional technical and financial support. At the health-facility level, change from collecting aggregated to individual-level data. The use of PIN across multiple data sources is paramount, in addition to clear and transparent legal and ethical data protection and sharing guidelines, centralized data linkage by the governments, and partnerships with the private sector. Conclusion: High-quality linked data in SSA are scarce. SSA countries should prioritize establishing a robust foundation for high-quality data collection and future linkage. [ABSTRACT FROM AUTHOR]

PURPOSE Database linkage between cancer registries and clinical trial consortia has the potential to elucidate referral patterns of children and adolescents with newly diagnosed cancer, including enrollment into cancer clinical trials. This study's primary objective was to assess the feasibility of this linkage approach. METHODS Patients younger than 20 years diagnosed with incident cancer during 2012-2017 in the Kentucky Cancer Registry (KCR) were linked with patients enrolled in a Children's Oncology Group (COG) study. Matched patients between databases were described by sex, age, race and ethnicity, geographical location when diagnosed, and cancer type. Logistic regression modeling identified factors associated with COG study enrollment. Timeliness of patient identification by KCR was reported through the Centers for Disease Control and Prevention's Early Case Capture (ECC) program. RESULTS Of 1,357 patients reported to KCR, 47% were determined by matching to be enrolled in a COG study. Patients had greater odds of enrollment if they were age 0-4 years (v 15-19 years), reported from a COG-affiliated institution, and had renal cancer, neuroblastoma, or leukemia. Patients had lower odds of enrollment if Hispanic (v non-Hispanic White) or had epithelial (eg, thyroid, melanoma) cancer. Most (59%) patients were reported to KCR within 10 days of pathologic diagnosis. CONCLUSION Linkage of clinical trial data with cancer registries is a feasible approach for tracking patient referral and clinical trial enrollment patterns. Adolescents had lower enrollment compared with younger age groups, independent of cancer type. Population-based early case capture could guide interventions designed to increase cancer clinical trial enrollment. [ABSTRACT FROM AUTHOR]

Routinely collected data help estimate the prevalence of autism spectrum disorder (ASD) in jurisdictions without active autism surveillance. We created a population-based cohort of 1,211,834 children born in 2002–2015 in New South Wales, Australia using data linkage. Children with ASD were identified in three datasets – disability services, hospital admissions, and ambulatory mental health data. The prevalence of ASD in the cohort was 1.3% by age 12 and prevalence at age 6 increased an average of 4.1% per year (95% Confidence Interval, 3.3%, 4.8%). Most children with ASD were identified in disability services data (87%), although data linkage identified 1,711 additional cases that were more likely female, older at first contact, and living in major cities and less disadvantaged areas. [ABSTRACT FROM AUTHOR]

In today's data-driven world, the exponential growth of digital information poses significant challenges in data management. In recent years, the adoption of cloud-based Electronic Health Records (EHR) sharing schemes has yielded numerous advantages like improved accessibility, availability, and enhanced interoperability. However, the centralized nature of cloud storage presents challenges in terms of information storage, privacy protection, and security. Despite several approaches that have been presented to ensure secure deduplication of similar EHRs, the validation of data integrity without a third-party auditor (TPA) remains a persistent task. Because involving a TPA raises concerns about the confidentiality and privacy of crucial healthcare information. To tackle this challenge, a novel cloud storage auditing technique is proposed that incorporates cross-patient block-level deduplication while upholding strong privacy protection, ensuring that EHR is not compromised. Here, we introduced blockchain technology to achieve integrity verification, thus eliminating the need for a TPA by providing a decentralized and transparent mechanism. Additionally, an index for all EHRs has been generated to facilitate block-level duplicate checks and employ a novel strategy to prevent adversaries from acquiring original information saved in the cloud storage. The security of the proposed approach is established against factorization attacks and decrypt exponent attacks. The performance evaluation demonstrates the superior efficiency of the proposed scheme in terms of file authenticator generation, challenge creation, and proof verification to other existing client-side deduplication approaches. [ABSTRACT FROM AUTHOR]

Feline chronic gingivostomatitis (FCGS) is a debilitating inflammatory oral mucosal disease with a multifactorial etiology. The clinical diagnosis of FCGS is made based on inspection of severe inflammatory lesions and histological confirmation rather than a molecular diagnostic outcome. This gap limits the ability to provide an early diagnosis. In this report, we seek to provide additional diagnostic tools using genomics to aid in providing clinically relevant information. The use of in-depth diagnostic tools, like transcriptomics of diseased tissues, to diagnose FCGS and stratify patients into predictive treatment response groups would dramatically improve both clinical decisions and patient outcomes. In this study, we addressed the gap in diagnostic options using transcriptomic analysis of caudal oral mucosal swab specimens coupled to detailed medical record linkage of FCGS-affected cats undergoing tooth extractions and in some cases administration of mesenchymal stromal cells (MSCs). To better identify markers of disease and potential response to treatment, the transcriptomes of FCGS-afflicted cats were compared to those of healthy cats and those with chronic periodontitis to clearly establish diagnostic biomarker signal transduction connections. Phosphatidylinositol 3-kinase/Ak strain transforming (PI3K/AKT) and stress-activated protein kinases/Jun N-terminal kinase (SAP/JNK) signaling pathways were significantly differentially regulated in FCGS-afflicted cats. Activation of these pathways also differed in the treatment response groups. In conjunction, the enzymes Caspase 4 (CASP4), matrix metalloproteinase-8 (MMP8), and prostaglandin-endoperoxide synthase 2 (PTGS2) were identified as potential biomarkers for the prediction of treatment response outcomes. The observations in the case study support the use of transcriptomics of FCGS patients to contribute to improved molecular diagnostics for the diagnosis and treatment of FCGS. [ABSTRACT FROM AUTHOR]

Background: Little is known regarding the leading risk factors for dementia/Alzheimer's disease (AD) in individuals with and without APOE4. The identification of key risk factors for dementia/Alzheimer's disease (AD) in individuals with and without the APOE4 gene is of significant importance in global health. Methods: Our analysis included 110,354 APOE4 carriers and 220,708 age- and sex-matched controls aged 40–73 years at baseline (between 2006–2010) from UK Biobank. Incident dementia was ascertained using hospital inpatient, or death records until January 2021. Individuals of non-European ancestry were excluded. Furthermore, individuals without medical record linkage were excluded from the analysis. Moderation analysis was tested for 134 individual factors. Results: During a median follow-up of 11.9 years, 4,764 cases of incident all-cause dementia and 2065 incident AD cases were documented. Hazard ratios (95% CIs) for all-cause dementia and AD associated with APOE4 were 2.70(2.55–2.85) and 3.72(3.40–4.07), respectively. In APOE4 carriers, the leading risk factors for all-cause dementia included low self-rated overall health, low household income, high multimorbidity risk score, long-term illness, high neutrophil percentage, and high nitrogen dioxide air pollution. In non-APOE4 carriers, the leading risk factors included high multimorbidity risk score, low overall self-rated health, low household income, long-term illness, high microalbumin in urine, high neutrophil count, and low greenspace percentage. Population attributable risk for these individual risk factors combined was 65.1%, and 85.8% in APOE4 and non-APOE4 carriers, respectively. For 20 risk factors including multimorbidity risk score, unhealthy lifestyle habits, and particulate matter air pollutants, their associations with incident dementia were stronger in non-APOE4 carriers. For only 2 risk factors (mother's history of dementia, low C-reactive protein), their associations with incident all-cause dementia were stronger in APOE4 carriers. Conclusions: Our findings provide evidence for personalized preventative approaches to dementia/AD in APOE4 and non-APOE4 carriers. A mother's history of dementia and low levels of C-reactive protein were more important risk factors of dementia in APOE4 carriers whereas leading risk factors including unhealthy lifestyle habits, multimorbidity risk score, inflammation and immune-related markers were more predictive of dementia in non-APOE4 carriers. [ABSTRACT FROM AUTHOR]

Key Points: Question: In patients with a history of gout, are higher levels of serum urate associated with a higher incidence of subsequent gout flares? Findings: In this retrospective population-based study of 3613 patients with gout with a mean follow-up of 8.3 years, higher urate levels at baseline were associated with higher rates of recurrent gout. Overall, 95% of gout flares occurred in people with serum urate greater than or equal to 6 mg/dL and 98% occurred in people with serum urate greater than or equal to 5 mg/dL. Meaning: Among patients with a history of gout, these findings support using a baseline serum urate value to assess risk of subsequent gout flares. Importance: Approximately 12 million adults in the US have a history of gout, but whether serum urate levels can help predict recurrence is unclear. Objective: To assess associations of a single serum urate measurement with subsequent risk of acute gout flares and subsequent risk of hospitalizations for gout among patients in the UK with a history of gout. Design, Setting, and Participants: This retrospective study included patients with a history of gout identified from the UK between 2006 and 2010 who were followed up through Primary Care Linked Data medical record linkage until 2017 and through the Hospital Episode Statistics database until 2020. Exposures: Serum urate levels at enrollment. Main Outcome and Measure: Rate of recurrent acute gout, ascertained by hospitalization, outpatient, and prescription/procedure records, and adjusted rate ratios using negative binomial regressions. Results: Among 3613 patients with gout (mean age, 60 years; 3104 [86%] men), 1773 gout flares occurred over a mean follow-up of 8.3 years. Of these, 1679 acute gout flares (95%) occurred in people with baseline serum urate greater than or equal to 6 mg/dL and 1731 (98%) occurred in people with baseline serum urate greater than or equal to 5 mg/dL. Rates of acute gout flares per 1000 person-years were 10.6 for participants with baseline urate levels less than 6 mg/dL, 40.1 for levels of 6.0 to 6.9 mg/dL, 82.0 for levels of 7.0 to 7.9 mg/dL, 101.3 for levels of 8.0 to 8.9 mg/dL, 125.3 for urate levels of 9.0 to 9.9 mg/dL, and 132.8 for levels greater than or equal to 10 mg/dL. Rate ratio of flares were 1.0, 3.37, 6.93, 8.67, 10.81, and 11.42, respectively, over 10 years (1.61 [1.54-1.68] per mg/dL). Rates of hospitalization per 1000 person-years during follow-up were 0.18 for those with baseline serum urate less than 6 mg/dL, 0.97 for serum urate of 6.0 to 6.9 mg/dL, 1.8 for serum urate of 7.0 to 7.9 mg/dL, 2.2 for serum urate of 8.0 to 8.9 mg/dL, 6.7 for serum urate of 9.0 to 9.9 mg/dL, and 9.7 for serum urate greater than or equal to 10 mg/dL. Rate ratios of hospitalization for gout, adjusting for age, sex, and race were 1.0, 4.70, 8.94, 10.37, 33.92, and 45.29, respectively (1.87 [1.57-2.23] per mg/dL). Conclusions and Relevance: In this retrospective study of patients with a history of gout, serum urate levels at baseline were associated with the risk of subsequent gout flares and rates of hospitalization for recurrent gout. These findings support using a baseline serum urate level to assess risk of recurrent gout over nearly 10 years of follow-up. This retrospective study of patients with gout examines whether serum urate levels are associated with subsequent risk of gout flares and hospitalization for gout. [ABSTRACT FROM AUTHOR]

Objective. Data linkage is a very powerful research tool in epidemiology, however, establishing this can be a lengthy and intensive process. This paper reports on the complex landscape of conducting data linkage projects in Australia. Methods. We reviewed the processes, required documentation, and applications required to conduct multi-jurisdictional data linkage across Australia, in 2023. Results. Obtaining the necessary approvals to conduct linkage will likely take nearly 2 years (estimated 730 days, including 605 days from initial submission to obtaining all ethical approvals and an estimated further 125 days for the issuance of unexpected additionally required approvals). Ethical review for linkage projects ranged from 51 to 128 days from submission to ethical approval, and applications consisted of 9-25 documents. Conclusions. Major obstacles to conducting multi-jurisdictional data linkage included the complexity of the process, and substantial time and financial costs. The process was characterised by inefficiencies at several levels, reduplication, and a lack of any key accountabilities for timely performance of processes. Data linkage is an invaluable resource for epidemiological research. Further streamlining, establishing accountability, and greater collaboration between jurisdictions is needed to ensure data linkage is both accessible and feasible to researchers. [ABSTRACT FROM AUTHOR]

Background: Cancer often co-occurs with other chronic conditions, which may result in polypharmacy. Polypharmacy is associated with adverse outcomes, including increased health service utilization. Objectives: This study examines the overall prevalence of polypharmacy (5 or more medications) among adults with cancer and multimorbidity, as well as the association of both minor polypharmacy (5-9 medications) and hyper-polypharmacy (10 or more medications) on high use of emergency room visits and hospitalizations, while controlling for age, sex, and type and stage of cancer. Methods: This retrospective longitudinal study used linked health administrative databases and included persons 18 years and older diagnosed with cancer between April 2010 and March 2013 in Ontario, Canada. Data on the number of health service utilizations at or above the 90th percentile (high users), was collected up to March 2014 and multivariate logistic regression was used to determine the impact of polypharmacy. Results: The prevalence of polypharmacy was 46% prior to cancer diagnosis, and 57% one year after diagnosis. Polypharmacy prior to and after cancer diagnosis increased with the level of multimorbidity, increasing age, but did not differ by sex. It was also highest in persons with lung cancer (52.4%) and those diagnosed with stage 4 cancer (51.3%). Minor polypharmacy increased the odds of being a high user of emergency rooms (1.16; 99% CI: 1.09-1.24) and hospitalizations (1.03; 0.98-1.09) and the odds of high use was greater with hyper-polypharmacy (1.41; 1.33-1.51) and (1.23; 1.17-1.29) respectively. Conclusion: Polypharmacy is highly prevalent and is associated with high health service utilization among adults with cancer and multimorbidity [ABSTRACT FROM AUTHOR]

Background The Atrial fibrillation Better Care (ABC) pathway is the gold-standard approach to atrial fibrillation (AF) management, but the effect of implementation on health outcomes in care home residents is unknown. Objective To examine associations between ABC pathway adherence and stroke, transient ischaemic attack, cardiovascular hospitalisation, major bleeding, mortality and a composite of all these outcomes in care home residents. Methods A retrospective cohort study of older care home residents (≥65 years) in Wales with AF was conducted between 1 January 2003 and 31 December 2018 using the Secure Anonymised Information Linkage Databank. Adherence to the ABC pathway was assessed at care home entry using pre-specified definitions. Cox proportional hazard and competing risk models were used to estimate the risk of health outcomes according to ABC adherence. Results From 14,493 residents (median [interquartile range] age 87.0 [82.6–91.2] years, 35.2% male) with AF, 5,531 (38.2%) were ABC pathway adherent. Pathway adherence was not significantly associated with risk of the composite outcome (adjusted hazard ratio, 95% confidence interval [CI]: 1.01 [0.97–1.05]). There was a significant independent association observed between ABC pathway adherence and a reduced risk of myocardial infarction (0.70 [0.50–0.98]), but a higher risk of haemorrhagic stroke (1.59 [1.06–2.39]). ABC pathway adherence was not significantly associated with any other individual health outcomes examined. Conclusion An ABC adherent approach in care home residents was not consistently associated with improved health outcomes. Findings should be interpreted with caution owing to difficulties in defining pathway adherence using routinely collected data and an individualised approach is recommended. [ABSTRACT FROM AUTHOR]

Introduction: General practice data, particularly when combined with hospital and other health service data through data linkage, are increasingly being used for quality assurance, evaluation, health service planning and research. In this study, we explored community views on sharing general practice data for secondary purposes, including research, to establish what concerns and conditions need to be addressed in the process of developing a social licence to support such use. Methods: We used a mixed‐methods approach with focus groups (November–December 2021), followed by a cross‐sectional survey (March–April 2022). Results: The participants in this study strongly supported sharing general practice data with the clinicians responsible for their care, and where there were direct benefits for individual patients. Over 90% of survey participants (N = 2604) were willing to share their general practice information to directly support their health care, that is, for the primary purpose of collection. There was less support for sharing data for secondary purposes such as research and health service planning (36% and 45% respectively in broad agreement) or for linking general practice data to data in the education, social services and criminal justice systems (30%–36%). A substantial minority of participants were unsure or could not see how benefits would arise from sharing data for secondary purposes. Participants were concerned about the potential for privacy breaches, discrimination and data misuse and they wanted greater transparency and an opportunity to consent to data release. Conclusion: The findings of this study suggest that the public may be more concerned about sharing general practice data for secondary purposes than they are about sharing data collected in other settings. Sharing general practice data more broadly will require careful attention to patient and public concerns, including focusing on the factors that will sustain trust and legitimacy in general practice and GPs. Patient and Public Contribution: Members of the public were participants in the study. Data produced from their participation generated study findings. Clinical Trial Registration: Not applicable. [ABSTRACT FROM AUTHOR]

Human Immunodeficiency Virus (HIV)-positive individuals lost to follow-up from particular clinics may not be lost to care (LTC). After linking Vanderbilt's Comprehensive Care Clinic cohort to Tennessee's statewide HIV surveillance database, LTC decreased from 48.4% to 35.0% at 10 years. Routine surveillance linkage by domestic HIV clinics would improve LTC and retention measure accuracy. [ABSTRACT FROM AUTHOR]

PURPOSE Many maternal deaths occur beyond the acute birth encounter. There are opportunities for improving maternal health outcomes through facilitated quality improvement efforts in community settings, particularly in the postpartum period. We used a mixed methods approach to evaluate a collaborative quality improvement (QI) model in 6 Chicago Federally Qualified Health Centers (FQHCs) that implemented workflows optimizing care continuity in the extended postpartum period for high-risk prenatal patients. METHODS The Quality Improvement Learning Collaborative focused on the implementation of a registry of high-risk prenatal patients to link them to primary care and was implemented in 2021; study data were collected in 2021-2022. We conducted a quantitative evaluation of FQHC-reported aggregate structure, process, and outcomes data at baseline (2020) and monthly (2021). Qualitative analysis of semistructured interviews of participating FQHC staff focused on the experience of participating in the collaborative. RESULTS At baseline, none of the 6 participating FQHCs had integrated workflows connecting high-risk prenatal patients to primary care; by the end of implementation of the QI intervention, such workflows had been implemented at 19 sites across all 6 FQHCs, and 54 staff were trained in using these workflows. The share of high-risk patients transitioned to primary care within 6 months of delivery significantly increased from 25% at baseline to 72% by the end of implementation. Qualitative analysis of interviews with 11 key informants revealed buy-in, intervention flexibility, and collaboration as facilitators of successful engagement, and staffing and data infrastructure as participation barriers. CONCLUSIONS Our findings show that a flexible and collaborative QI approach in the FQHC setting can help optimize care delivery. Future evaluations should incorporate the patient experience and patient-level data for comprehensive analysis. [ABSTRACT FROM AUTHOR]

Objective: Anorexia nervosa (AN) and bulimia nervosa (BN) are eating disorders associated with high rates of self‐harm (SH). This is the first national study in England to quantify this association in a hospital population. Method: A retrospective cohort study using a linked national dataset of Hospital Episode Statistics for 1999–2021. The exposure cohort included individuals aged <35 years admitted to hospital with a diagnosis of AN or BN. The reference cohort included hospital controls. We calculated the rate ratio (RR) of SH in each cohort. The individuals in the two cohorts were matched on multiple socio‐demographic indicators. The main outcome was a subsequent hospitalization or death record with an SH diagnosis. Results: We identified 15,004 females and 1411 males with AN, and 6055 females and 741 males with BN. The RR with 95% confidence intervals (95%CI) for a subsequent admission with intentional self‐harm after admission with AN was 4.9 (95%CI 4.7–5.1) in females and 4.8 (95%CI 3.9–5.8) in males. For BN it was 9.0 (95%CI 8.4–9.6) in females and 9.8 (95%CI 7.7–12.2) in males. There were strong associations between AN and BN and other SH. Discussion: Women and men admitted to English hospitals with AN or BN have a very high risk of a subsequent admission with SH. For some SH behaviors, such as alcohol intoxication, the RR was >10‐fold elevated. The magnitude of risk was higher for BN than for AN. Clinicians should be aware of the scale of risk increase. Providing those at risk with appropriate support is required. Public significance: This study is the first national study in an English hospital population that confirms and quantifies the association between eating disorders and self‐harm. We have found that both women and men admitted to hospital with anorexia nervosa or bulimia nervosa are at an increased risk of subsequent admission with self‐harm. It is important that clinicians are aware of this increased risk to support those at highest risk of self‐harm. [ABSTRACT FROM AUTHOR]

Background: Educational attainment is an understudied outcome in eating disorders (ED). We compared the educational attainment of individuals with and without ED. Methods: This study is a nationwide, register‐based, observational epidemiological study using record linkage. The studied cohorts were (1) all persons treated psychiatrically for ED from 1970 to 2014, and (2) a control population matched for sex, age, and place of residence. The International Standard Classification of Education 2011 was used to classify educational attainment. We employed ineqord, a series of graphical and analytical tools that are appropriate for comparing the distributions of ordinal data (Jenkins, 2020). Results: Females with ED attained higher educational levels than males with ED. Males with ED had lower average educational levels than controls. On average, female controls attained higher educational levels than patients with ED in the eating disorders not otherwise specified or overeating groups. Females with anorexia nervosa, differed from matched controls: While their median was the same, too many participants were in the lower and higher levels of educational attainment. Females with bulimia nervosa had higher educational levels than matched controls on average. Conclusions: Educational attainment differs between individuals with and without out ED for all ED diagnoses and in both sexes. Key points: Males (all diagnoses) and females with eating disorders not otherwise specified and psychogenic overeating (EDNOS‐ and DF50.4‐females) on average attained lower educational levels than the matched controls.Females with anorexia nervosa had the same median educational level as the matched controls, but their distribution differed as there were 'too few' participants in the middle and 'too many' at both ends.Females with bulimia nervosa on average attained higher educational levels than the matched controls. [ABSTRACT FROM AUTHOR]

The rise in health care costs, caused by older and more complex patient populations, requires Population Health Management approaches including risk stratification. With risk stratification, patients are assigned individual risk scores based on medical records. These patient stratifications focus on future high costs and expensive care utilization such as hospitalization, for which different models exist. With this study, the research team validated the accuracy of risk prediction scores for future hospitalization and high health care costs, calculated by the Adjusted Clinical Group (ACG)'s risk stratification models, using Dutch primary health care data registries. In addition, they aimed to adjust the US-based predictive models for Dutch primary care. The statistical validity of the existing models was assessed. In addition, the underlying prediction models were trained on 95,262 patients' data from de Zoetermeer region and externally validated on data of 48,780 patients from Zeist, Nijkerk, and Urk. Information on age, sex, number of general practitioner visits, International Classification of Primary Care coded information on the diagnosis and Anatomical Therapeutic Chemical Classification coded information on the prescribed medications, were incorporated in the model. C-statistics were used to validate the discriminatory ability of the models. Calibrating ability was assessed by visual inspection of calibration plots. Adjustment of the hospitalization model based on Dutch data improved C-statistics from 0.69 to 0.75, whereas adjustment of the high-cost model improved C-statistics from 0.78 to 0.85, indicating good discrimination of the models. The models also showed good calibration. In conclusion, the local adjustments of the ACG prediction models show great potential for use in Dutch primary care. [ABSTRACT FROM AUTHOR]

Background: Women present to the emergency department (ED) with pregnancy complications including bleeding. They seek investigations, treatment and clear discharge and referral pathways. Aims: The aim was to identify trends, characteristics, ED care and discharge pathways for women who present to the ED with early pregnancy bleeding. Methods: Retrospective data (from 2011 to 2020) were extracted from a regional health district's databank. Data were processed, and deterministic linking was used to produce a final data set. Descriptive statistics were used to identify trends and characteristics. Linear and logistic regression models were used to identify factors that influence health service use, outcomes and discharge pathways. Results: Over the 10 years, there have been almost 15 000 presentations to the ED for early pregnancy bleeding, from approximately 10 000 women, 0.97% of all ED presentations. The frequency of presentations increased by 19.6% over the study period. The average age of women who presented to the ED was 29.1 years, which increased from 28.5 years (2011) to 29.3 (2020). The median length of stay was less than 4 h, and most women were treated and discharged from the ED. One‐third of presentations received neither ultrasound nor pathology, but health service costs increased by 330% from 2014 to 2020. Conclusions: Maternal age is increasing, as is the frequency of ED presentations for early pregnancy bleeding, and both factors increase demands on the ED. Findings from this study may inform strategies to improve current care models and improve quality and safety practices within the ED. [ABSTRACT FROM AUTHOR]

While there is potential for societal benefit from linkage and integration of large datasets, there are gaps in our understanding of the implications for children and young people, and limited inclusion of their views within this discourse. We aimed to understand the views and expectations of children, young people and their parents/caregivers in Aotearoa New Zealand regarding child health data storage, linkage and consent for use. This qualitative study included 24 Māori and non-Māori children, young people and their families across five focus groups, recruited from a community-based health service. A mixed Māori and non-Māori research team facilitated participant recruitment and data collection. Child, adolescent and parent/caregiver groups were held separately. Sessions were audio-recorded and the verbatim transcripts were analysed thematically. We identified three themes: (i) I am more than a number: seeing patients as people; (ii) In safe hands: data as power; and (iii) What are your intentions with my data? Consent as an active relationship. A key challenge was the reductive and stigmatizing potential of data integration for minoritised groups. Hypothetical discussions of data sharing and linkage were contingent on trust between the participant and the health professional, with negotiated data ownership. Consent was conceived as an active relationship needing renewal and renegotiation as children reached adulthood. Current consent processes for ongoing use of child data require further deliberation. Without a strong ethical and child rights-based approach to issues of child health data management, consent and linkage, we risk exacerbating health inequities and experiences of breach of trust. [ABSTRACT FROM AUTHOR]

Abstract Background Attention-deficit hyperactivity disorder (ADHD) affects around 1 in 20 children and is associated with life-long sequelae. Previous studies of the association between Apgar score and ADHD have reported inconsistent findings. Methods Record linkage of maternity, prescribing and school pupil census databases was used to conduct a population e-cohort study of singleton children born in Scotland and attending school in Scotland at any point between 2009 and 2013. Binary logistic regression analysis was used to investigate the association between 5-min Apgar score and treated ADHD adjusting for sociodemographic and maternity confounders. Results Of the 758,423 children, 7,292 (0.96%) received ADHD medication. The results suggested a potential dose–response relationship between Apgar score and treated ADHD independent of confounders. Referent to an Apgar score of 10, risk of treated ADHD was higher for scores of 0–3 (adjusted OR 1.76, 95% CI 1.32–2.34), 4–6 (adjusted OR 1.50, 95% CI 1.21–1.86) and even 7–9 (adjusted OR 1.26, 95% CI 1.18–1.36) which are traditionally considered within the normal range. Conclusions In addition to reinforcing the need to maximise Apgar score through good obstetric practice, the findings suggest that Apgar score may be useful in predicting future risk of ADHD and therefore facilitating early diagnosis and treatment.

Abstract Background Mental health (MH) care often exhibits uneven quality and poor coordination of physical and MH needs, especially for patients with severe mental disorders. This study tests a Population Health Management (PHM) approach to identify patients with severe mental disorders using administrative health databases in Italy and evaluate, manage and monitor care pathways and costs. A second objective explores the feasibility of changing the payment system from fee-for-service to a value-based system (e.g., increased care integration, bundled payments) to introduce performance measures and guide improvement in outcomes. Methods Since diagnosis alone may poorly predict condition severity and needs, we conducted a retrospective observational study on a 9,019-patient cohort assessed in 2018 (30.5% of 29,570 patients with SMDs from three Italian regions) using the Mental Health Clustering Tool (MHCT), developed in the United Kingdom, to stratify patients according to severity and needs, providing a basis for payment for episode of care. Patients were linked (blinded) with retrospective (2014–2017) physical and MH databases to map resource use, care pathways, and assess costs globally and by cluster. Two regions (3,525 patients) provided data for generalized linear model regression to explore determinants of cost variation among clusters and regions. Results Substantial heterogeneity was observed in care organization, resource use and costs across and within 3 Italian regions and 20 clusters. Annual mean costs per patient across regions was €3,925, ranging from €3,101 to €6,501 in the three regions. Some 70% of total costs were for MH services and medications, 37% incurred in dedicated mental health facilities, 33% for MH services and medications noted in physical healthcare databases, and 30% for other conditions. Regression analysis showed comorbidities, resident psychiatric services, and consumption noted in physical health databases have considerable impact on total costs. Conclusions The current MH care system in Italy lacks evidence of coordination of physical and mental health and matching services to patient needs, with high variation between regions. Using available assessment tools and administrative data, implementation of an episodic approach to funding MH could account for differences in disease phase and physical health for patients with SMDs and introduce performance measurement to improve outcomes and provide oversight.

BACKGROUND: The etiology of diverticulitis is multifactorial and poorly understood. We estimated the familiality of diverticulitis using the Utah Population Database, a statewide database linking medical records with genealogy data. STUDY DESIGN: We identified patients with diverticulitis diagnosed between 1998 and 2018 and age- and sexmatched controls in the Utah Population Database. Risk of diverticulitis in family members of patients and controls was calculated using multivariable Poisson models. We performed exploratory analyses to determine the association of familial diverticulitis with severity of disease and age of onset. RESULTS: The study population included 9,563 diverticulitis patients (with 229,647 relatives) and 10,588 controls (with 265,693 relatives). Relatives of patients were more likely to develop diverticulitis (incidence rate ratio [IRR] 1.5, 95% CI 1.4 to 1.6) compared with relatives of controls. There was an elevated risk of diverticulitis among first-degree (IRR 2.6, 95% CI 2.3 to 3.0), second-degree (IRR 1.5, 95% CI 1.3 to 1.6), and third-degree relatives of patients (IRR 1.3, 95% CI 1.2 to 1.4). Complicated diverticulitis was more common among relatives of patients compared with relatives of controls (IRR 1.6, 95% CI 1.4 to 1.8). Age at diverticulitis diagnosis was similar between groups (relatives of patients 0.2 years older than relatives of controls, 95% CI -0.5 to 0.9). CONCLUSIONS: Our results indicate that the first-, second-, and third-degree relatives of diverticulitis patients are at elevated risk of developing diverticulitis. This information may aid surgeons in counseling patients and family members about diverticulitis risk and can inform the development of future risk-stratification tools. Further work is needed to clarify the causal role and relative contribution of various genetic, lifestyle, and environmental factors in the development of diverticulitis. [ABSTRACT FROM AUTHOR]

Background: Attention-deficit hyperactivity disorder (ADHD) affects around 1 in 20 children and is associated with life-long sequelae. Previous studies of the association between Apgar score and ADHD have reported inconsistent findings. Methods: Record linkage of maternity, prescribing and school pupil census databases was used to conduct a population e-cohort study of singleton children born in Scotland and attending school in Scotland at any point between 2009 and 2013. Binary logistic regression analysis was used to investigate the association between 5-min Apgar score and treated ADHD adjusting for sociodemographic and maternity confounders. Results: Of the 758,423 children, 7,292 (0.96%) received ADHD medication. The results suggested a potential dose–response relationship between Apgar score and treated ADHD independent of confounders. Referent to an Apgar score of 10, risk of treated ADHD was higher for scores of 0–3 (adjusted OR 1.76, 95% CI 1.32–2.34), 4–6 (adjusted OR 1.50, 95% CI 1.21–1.86) and even 7–9 (adjusted OR 1.26, 95% CI 1.18–1.36) which are traditionally considered within the normal range. Conclusions: In addition to reinforcing the need to maximise Apgar score through good obstetric practice, the findings suggest that Apgar score may be useful in predicting future risk of ADHD and therefore facilitating early diagnosis and treatment. [ABSTRACT FROM AUTHOR]

Background: Patients with kidney failure on hemodialysis (HD) experience considerable symptom burden and poor health-related quality of life (HRQoL). There is limited use of patient reported outcome measures (PROMs) in facility HD units to direct immediate care, with response rates in other studies between 36 to 70%. The aim of this pilot study was to evaluate feasibility of electronic PROMs (e-PROMs) in HD participants, with feedback 3-monthly to the participants’ treating team, for severe or worsening symptoms as identified by the Integrated Palliative Outcome Scale (IPOS-Renal), with linkage to the Australian and New Zealand Dialysis and Transplant (ANZDATA) registry, compared with usual care. Methods: This is a registry-based cluster-randomized controlled pilot trial involving all adults receiving HD in 4 satellite units in Australia over a 6-month period. HD units were cluster randomized 1:1 to the control (HRQoL data collection only) or intervention arm (symptom monitoring with feedback to treating team every 3 months). Feasibility was assessed by participant response rate (percentage of eligible HD participants, including new incident participants, who completed the questionnaire at each time point); retention rate (percentage of participants who completed the baseline questionnaire and all subsequent measures); and completion time. HRQoL and symptom burden scores are described. Results: There were 226 unique participants who completed the e-PROMs (mean age 62 years, 69% males, 78% White-European, median dialysis vintage 1.62 years). At 6 months, response rate and retention rate for the intervention arm were 54% and 68%, respectively, and 89% and 97% in the control arm. Median time to complete IPOS-Renal was 6.6 min (5.3, 10.1) at 3 months, and when combined with the outcome measure (EQ-5D-5L), the median time was 9.4 min (6.9, 13.6) at 6 months. Conclusions: Electronic symptom monitoring among HD participants with feedback to clinicians is feasible. Variations in response and retention rates could be potentially explained by the lengthier questionnaire, and higher frequency of data collection time points for participants in the intervention arm. A definitive national RCT is underway. Trial registration: ACTRN12618001976279 (07/12/2018). [ABSTRACT FROM AUTHOR]

Transitions of patient care between hospital discharge and primary care are known to be an area of high-risk where communication is imperative for patient safety. Discharge summaries are known to often be incomplete, delayed and unhelpful for community healthcare providers. The aim of this review was to identify and map the literature which discusses Australian general practitioners' (GPs) views on the qualities that make up effective discharge communication. Medline, Scopus and the Cochrane register of controlled drug trails and systematic reviews were searched for publications until October 2021 that discussed Australian GPs' views on discharge communication from hospital to general practice. Of 1696 articles identified, 18 met inclusion and critical appraisal criteria. Five studies identified that GPs view timeliness of discharge summary receipt to be a problem. Communication of medication information in the discharge summary was discussed in six studies, with two reporting that GPs view reasons for medication changes to be essential. Five studies noted GPs would prefer to receive clinical discipline or diagnosis specific information. Four studies identified that GPs viewed the format and readability of discharge summaries to be problematic, with difficulties finding salient information. The findings of this scoping review indicate that GPs view timeliness, completeness, readability, medication related information and diagnosis/clinical discipline specific information to be qualities that make up effective discharge communication from hospital to the community. There are opportunities for further research in perspectives of effective discharge communication, and future studies on interventions to improve discharge communication, patient safety and policy in transfers of care. The aim of this scoping review was to identify and map the literature which discusses specifically Australian general practitioners' (GPs) views on the qualities that make up effective discharge communication from hospital care back to primary care. The findings indicate that GPs view timeliness , completeness , readability , medication related information and diagnosis/clinical discipline specific information to be qualities that make up effective discharge communication from hospital to the community. There are opportunities for further research into perspectives of effective discharge communication, and future studies on interventions to improve discharge communication, patient safety and policy in transfers of care. [ABSTRACT FROM AUTHOR]

The article discusses data linkage for research and it highlights the complexities and practical aspects. It reports the variations in data linkage methods across regions like Scandinavia, the U.K., and Australia and the impact of unique identifiers on accuracy. It emphasizes the benefits of data linkage in providing insights into health journeys, social determinants, health service planning, and understanding complex relationships between variables.

Aims To describe hypertension-related cardiovascular magnetic resonance (CMR) phenotypes in the UK Biobank considering variations across patient populations. Methods and results We studied 39 095 (51.5% women, mean age: 63.9 ± 7.7 years, 38.6% hypertensive) participants with CMR data available. Hypertension status was ascertained through health record linkage. Associations between hypertension and CMR metrics were estimated using multivariable linear regression adjusting for major vascular risk factors. Stratified analyses were performed by sex, ethnicity, time since hypertension diagnosis, and blood pressure (BP) control. Results are standardized beta coefficients, 95% confidence intervals, and P -values corrected for multiple testing. Hypertension was associated with concentric left ventricular (LV) hypertrophy (increased LV mass, wall thickness, concentricity index), poorer LV function (lower global function index, worse global longitudinal strain), larger left atrial (LA) volumes, lower LA ejection fraction, and lower aortic distensibility. Hypertension was linked to significantly lower myocardial native T1 and increased LV ejection fraction. Women had greater hypertension-related reduction in aortic compliance than men. The degree of hypertension-related LV hypertrophy was greatest in Black ethnicities. Increasing time since diagnosis of hypertension was linked to adverse remodelling. Hypertension-related remodelling was substantially attenuated in hypertensives with good BP control. Conclusion Hypertension was associated with concentric LV hypertrophy, reduced LV function, dilated poorer functioning LA, and reduced aortic compliance. Whilst the overall pattern of remodelling was consistent across populations, women had greater hypertension-related reduction in aortic compliance and Black ethnicities showed the greatest LV mass increase. Importantly, adverse cardiovascular remodelling was markedly attenuated in hypertensives with good BP control. [ABSTRACT FROM AUTHOR]

Background: There is evidence suggesting racial disparities in diagnosis and treatment in bipolar disorder (BD) and schizophrenia (SZ). The purpose of this study is to compare psychiatric diagnoses and psychotropic use preceding a first episode of mania (FEM) or psychosis (FEP) in racially diverse patients. Methods: Using a comprehensive medical records linkage system (Rochester Epidemiology Project, REP), we retrospectively identified individuals diagnosed with BD or SZ and a documented first episode of mania or psychosis. Illness trajectory before FEP/FEM were characterized as the time from first visit for a mental health complaint to incident case. Pathways to care and clinical events preceding FEP/FEM were compared based on subsequent incident case diagnosis (BD or SZ) and self-reported race (White vs. non-White). Results: A total of 205 (FEM = 74; FEP = 131) incident cases were identified in the REP. Duration of psychiatric antecedents was significantly shorter in non-White patients, compared to White patients (2.2 ± 4.3 vs. 7.4 ± 6.6 years; p < 0.001) with an older age at time of first visit for a mental health complaint (15.7 ± 6.3 vs. 11.1 ± 6.0 years; p = 0.005). There were no significant differences by race in FEM pathway to care or age of first seeking mental health. Overall non-White patients had lower rates of psychotropic use. Conclusion: These data are unable to ascertain reasons for shorter duration of psychiatric antecedents and later age of seeking care, and more broadly first age of initial symptom presentation. If symptoms are confirmed to be earlier than first time seeking care in both groups, it would be important to identify barriers that racial minorities face to access timely psychiatric care and optimize early intervention strategies. [ABSTRACT FROM AUTHOR]

Background: Retinal nerve fiber layer (RNFL) thickness may reflect cerebral status. Objective: This study assessed the relationship between RNFL thickness and incident all-cause dementia in the European Prospective Investigation into Cancer in Norfolk (EPIC-Norfolk) Eye Study. Methods: Glaucoma detection with variable corneal compensation (GDx-VCC) and Heidelberg Retinal Tomograph II (HRT II) derived global mean RNFL thickness from dementia-free participants at baseline within the EPIC-Norfolk Eye Study were analyzed. Incident dementia was identified through linkage to electronic medical records. Cox proportional hazard mixed-effects regression models adjusted for key confounders were used to examine the associations between RNFL thickness and incident dementia in four separate models. Results: 6,239 participants were included with 322 cases of incident dementia and mean age of 67.5-years old, with 49.7% women (median follow-up 13.2-years, interquartile range (11.7 to 14.6 years). Greater RNFL thickness (GDx-VCC) was not significantly associated with a lower risk of incident dementia in the full adjusted model [HR per quartile increase 0.95; 95% CI 0.82–1.10]. Similarly, RNFL thickness assessed with HRT II was also not associated with incident dementia in any model (full adjusted model; HR per quartile increase: 1.06; [95% CI 0.93–1.19]. Gender did not modify any associations under study. Conclusion: GDx-VCC and HRT II derived RNFL thickness are unlikely to be useful predictors of incident dementia. Higher resolution optical imaging technologies may clarify whether there are useful relationships between neuro-retinal morphology and brain measures. [ABSTRACT FROM AUTHOR]

Background: Mental health (MH) care often exhibits uneven quality and poor coordination of physical and MH needs, especially for patients with severe mental disorders. This study tests a Population Health Management (PHM) approach to identify patients with severe mental disorders using administrative health databases in Italy and evaluate, manage and monitor care pathways and costs. A second objective explores the feasibility of changing the payment system from fee-for-service to a value-based system (e.g., increased care integration, bundled payments) to introduce performance measures and guide improvement in outcomes. Methods: Since diagnosis alone may poorly predict condition severity and needs, we conducted a retrospective observational study on a 9,019-patient cohort assessed in 2018 (30.5% of 29,570 patients with SMDs from three Italian regions) using the Mental Health Clustering Tool (MHCT), developed in the United Kingdom, to stratify patients according to severity and needs, providing a basis for payment for episode of care. Patients were linked (blinded) with retrospective (2014–2017) physical and MH databases to map resource use, care pathways, and assess costs globally and by cluster. Two regions (3,525 patients) provided data for generalized linear model regression to explore determinants of cost variation among clusters and regions. Results: Substantial heterogeneity was observed in care organization, resource use and costs across and within 3 Italian regions and 20 clusters. Annual mean costs per patient across regions was €3,925, ranging from €3,101 to €6,501 in the three regions. Some 70% of total costs were for MH services and medications, 37% incurred in dedicated mental health facilities, 33% for MH services and medications noted in physical healthcare databases, and 30% for other conditions. Regression analysis showed comorbidities, resident psychiatric services, and consumption noted in physical health databases have considerable impact on total costs. Conclusions: The current MH care system in Italy lacks evidence of coordination of physical and mental health and matching services to patient needs, with high variation between regions. Using available assessment tools and administrative data, implementation of an episodic approach to funding MH could account for differences in disease phase and physical health for patients with SMDs and introduce performance measurement to improve outcomes and provide oversight. Highlights: Mental health (MH) care often exhibits uneven quality and poor coordination of physical and mental health needs, especially for patients with severe mental disorders. Diagnosis alone may poorly predict condition severity and resources necessary to treat this patient group, but instruments such as the Mental Health Clustering Tool (MHCT) have been developed to better assess disease severity and diverse health needs within MH diagnosis groups. A Population Health Management approach using administrative health databases, the Mental Health Clustering Tool, and diverse comorbidity measures was tested in three regions in Italy for patients with severe mental disorders to map delivery, consumption, and cost patterns, and explore determinants of variation in cost, aimed to better assess organization and quality of care. Considerable variation in consumption patterns and costs, after stratifying patients based on needs and disease severity (MHCT) versus mere diagnosis, highlighted areas to address in designing a performance- versus volume-based payment model to better serve and follow MH patients. Methodology tested here using big - and "small" (from clinicians/patients) - data can be implemented by other healthcare systems to compare care pathways and outcomes across geographical areas and tie performance to payments for MH services. [ABSTRACT FROM AUTHOR]

BackgroundA relatively high proportion of Asian American, Native Hawaiian, and Pacific Islander (AANHPI) females with lung cancer have never smoked. We used an integrative data approach to assemble a large-scale cohort to study lung cancer risk among AANHPIs by smoking status with attention to representation of specific AANHPI ethnic groups.MethodsWe leveraged electronic health records (EHRs) from two healthcare systems-Sutter Health in northern California and Kaiser Permanente Hawai'i-that have high representation of AANHPI populations. We linked EHR data on lung cancer risk factors (i.e., smoking, lung diseases, infections, reproductive factors, and body size) to data on incident lung cancer diagnoses from statewide population-based cancer registries of California and Hawai'i for the period between 2000 and 2013. Geocoded address data were linked to data on neighborhood contextual factors and regional air pollutants.ResultsThe dataset comprises over 2.2 million adult females and males of any race/ethnicity. Over 250,000 are AANHPI females (19.6% of the female study population). Smoking status is available for over 95% of individuals. The dataset includes 7,274 lung cancer cases, including 613 cases among AANHPI females. Prevalence of never-smoking status varied greatly among AANHPI females with incident lung cancer, from 85.7% among Asian Indian to 14.4% among Native Hawaiian females.ConclusionWe have developed a large, multilevel dataset particularly well-suited to conduct prospective studies of lung cancer risk among AANHPI females who never smoked.ImpactThe integrative data approach is an effective way to conduct cancer research assessing multilevel factors on cancer outcomes among small populations.

The paper presents a collaborative approach employed to identify and examine the obstacles faced by telehealth solutions. The study involved the active participation of health start-ups, telehealth providers, and healthcare professionals delivering telehealth services. By harnessing the collective expertise and diverse perspectives of these stakeholders, the research led to develop an open platform, entitled Digital Connecting for Health, that has the potential to overcome the challenges impeding the widespread adoption and effectiveness of digital health services including telehealth in delivery of care. The developed platform shed light on various obstacles faced by telehealth solutions and provide valuable infrastructures for enhancing the implementation and efficacy of various digital health solutions, including telehealth applications, from various providers. [ABSTRACT FROM AUTHOR]

Background: The increasing prevalence of preexisting health conditions among pregnant people is often attributed to the concurrent rise in maternal age. However, the link between advanced maternal age (AMA) and increases in chronic conditions among the birthing population has not been systematically documented at the population level. Materials and Methods: This retrospective population-based cohort study was based on linked hospitalization discharge and birth certificate data for live birth deliveries in California from 1991 to 2012. Decomposition techniques evaluated whether changes in the prevalence of selected preexisting health conditions during delivery (autoimmune conditions, chronic hypertension, cardiac disease, diabetes, and renal disease) were explained by population-level increases in maternal age. Analyses further adjusted for maternal education, plurality, insurance status, and availability of paternal information on the birth certificate. Results: Between 1991 and 2012, there were more than 11.5 million live birth deliveries in California. AMA (≥35 years) increased nearly 70% over this period. The prevalence of autoimmune conditions, chronic hypertension, diabetes, and renal disease rose among the birthing population, while cardiac disease declined. The prevalence of all conditions was higher for AMA, but changes in maternal age accounted for only 5.3%, 8.4%, 13.9%, and 0.4%, of the increase in autoimmune conditions, chronic hypertension, diabetes, and renal disease, respectively. Conclusion: While AMA was associated with higher rates of preexisting health conditions, it contributed little to the increase in autoimmune conditions, chronic hypertension, and diabetes and nothing to the rise in renal disease during childbirth. [ABSTRACT FROM AUTHOR]

BackgroundPatients often seek medical treatment among different health care organizations, which can lead to redundant tests and treatments. One electronic health record (EHR) platform, Epic Systems, uses a patient linkage tool called Care Everywhere (CE), to match patients across institutions. To the extent that such linkages accurately identify shared patients across organizations, they would hold potential for improving care.ObjectiveThis study aimed to understand how accurate the CE tool with default settings is to identify identical patients between two neighboring academic health care systems in Southern California, The University of California Los Angeles (UCLA) and Cedars-Sinai Medical Center.MethodsWe studied CE patient linkage queries received at UCLA from Cedars-Sinai between November 1, 2016, and April 30, 2017. We constructed datasets comprised of linkages ("successful" queries), as well as nonlinkages ("unsuccessful" queries) during this time period. To identify false positive linkages, we screened the "successful" linkages for potential errors and then manually reviewed all that screened positive. To identify false-negative linkages, we applied our own patient matching algorithm to the "unsuccessful" queries and then manually reviewed a sample to identify missed patient linkages.ResultsDuring the 6-month study period, Cedars-Sinai attempted to link 181,567 unique patient identities to records at UCLA. CE made 22,923 "successful" linkages and returned 158,644 "unsuccessful" queries among these patients. Manual review of the screened "successful" linkages between the two institutions determined there were no false positives. Manual review of a sample of the "unsuccessful" queries (n = 623), demonstrated an extrapolated false-negative rate of 2.97% (95% confidence interval [CI]: 1.6-4.4%).ConclusionWe found that CE provided very reliable patient matching across institutions. The system missed a few linkages, but the false-negative rate was low and there were no false-positive matches over 6 months of use between two nearby institutions.

BackgroundChronic kidney disease (CKD) is a global public health problem, exhibiting sharp increases in incidence, prevalence, and attributable morbidity and mortality. There is a critical need to better understand the demographics, clinical characteristics, and key risk factors for CKD; and to develop platforms for testing novel interventions to improve modifiable risk factors, particularly for the CKD patients with a rapid decline in kidney function.MethodsWe describe a novel collaboration between two large healthcare systems (Providence St. Joseph Health and University of California, Los Angeles Health) supported by leadership from both institutions, which was created to develop harmonized cohorts of patients with CKD or those at increased risk for CKD (hypertension/HTN, diabetes/DM, pre-diabetes) from electronic health record data.ResultsThe combined repository of candidate records included more than 3.3 million patients with at least a single qualifying measure for CKD and/or at-risk for CKD. The CURE-CKD registry includes over 2.6 million patients with and/or at-risk for CKD identified by stricter guide-line based criteria using a combination of administrative encounter codes, physical examinations, laboratory values and medication use. Notably, data based on race/ethnicity and geography in part, will enable robust analyses to study traditionally disadvantaged or marginalized patients not typically included in clinical trials.DiscussionCURE-CKD project is a unique multidisciplinary collaboration between nephrologists, endocrinologists, primary care physicians with health services research skills, health economists, and those with expertise in statistics, bio-informatics and machine learning. The CURE-CKD registry uses curated observations from real-world settings across two large healthcare systems and has great potential to provide important contributions for healthcare and for improving clinical outcomes in patients with and at-risk for CKD.