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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]

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]

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]

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]

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]

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]

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]

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]

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]

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: 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]

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.

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]

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]

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]

Background: Mastitis is a common disorder among postpartum women. The discomfort and pain caused by mastitis may lead to the discontinuation of breastfeeding. Large-scale epidemiological studies examining mastitis are limited. Accordingly, the present study used a nationwide population-based database to collect information about all postpartum women in Taiwan to determine the incidence of and related factors for mastitis. Materials and Methods: This retrospective population-based study used the National Health Insurance Research Database to collect records of patients with mastitis during 2008–2017 and then linked the collected data to the Taiwan Birth Registry. We included women diagnosed as having lactational mastitis within 6 months of delivery. A multivariable logistic regression model was used to compare the risk of mastitis between parity in multiparous women. Results: We identified 1,686,167 deliveries in 1,204,544 women. 19,794 women with 20,163 deliveries had a medical claim for mastitis. The incidence proportion of mastitis for 6 months postpartum was ∼1.19% and highest during the first month after delivery. Multivariable logistic regression revealed that multiparous women with a history of mastitis were likely to experience mastitis again after subsequent deliveries (adjusted odds ratio = 5.86; 95% confidence interval = 5.21–6.58). The Kaplan–Meier curve indicated that primiparous women had a higher risk of mastitis than did multiparous women (log-rank test, p < 0.001). Conclusion: Mastitis generally occurred during the first month postpartum, and primiparous women had a higher risk of mastitis than did multiparous women. Furthermore, multiparous women with a history of mastitis had a 5.86-fold increased risk of recurrence during subsequent deliveries. [ABSTRACT FROM AUTHOR]

Background: Linked datasets that enable longitudinal assessments are scarce in low and middle‐income countries. Objectives: We aimed to assess the linkage of administrative databases of live births and under‐five child deaths to explore mortality and trends for preterm, small (SGA) and large for gestational age (LGA) in Mexico. Methods: We linked individual‐level datasets collected by National statistics from 2008 to 2019. Linkage was performed based on agreement on birthday, sex, residential address. We used the Centre for Data and Knowledge Integration for Health software to identify the best candidate pairs based on similarity. Accuracy was assessed by calculating the area under the receiver operating characteristic curve. We evaluated completeness by comparing the number of linked records with reported deaths. We described the percentage of linked records by baseline characteristics to identify potential bias. Using the linked dataset, we calculated mortality rate ratios (RR) in neonatal, infants, and children under‐five according to gestational age, birthweight, and size. Results: For the period 2008–2019, a total of 24,955,172 live births and 321,165 under‐five deaths were available for linkage. We excluded 1,539,046 records (6.2%) with missing or implausible values. We succesfully linked 231,765 deaths (72.2%: range 57.1% in 2009 and 84.3% in 2011). The rate of neonatal mortality was higher for preterm compared with term (RR 3.83, 95% confidence interval, [CI] 3.78, 3.88) and for SGA compared with appropriate for gestational age (AGA) (RR 1.22 95% CI, 1.19, 1.24). Births at <28 weeks had the highest mortality (RR 35.92, 95% CI, 34.97, 36.88). LGA had no additional risk vs AGA among children under five (RR 0.92, 95% CI, 0.90, 0.93). Conclusions: We demonstrated the utility of linked data to understand neonatal vulnerability and child mortality. We created a linked dataset that would be a valuable resource for future population‐based research. [ABSTRACT FROM AUTHOR]

Post-acute COVID-19 condition (PACC) – also known as long COVID – is a serious and growing problem in primary health. This letter describes the work of the Victorian Post-Acute COVID-19 Study (VPACS) group, which comprises clinician researchers, basic scientists and consumers. Two key priorities for PACC research in Australia are identified and discussed: (1) the establishment of COVID-19 patient registries and data linkage; and (2) the consolidation of clinical guidelines. Collaboration between consumers, researchers, clinicians and institutions must be the foundation of PACC management in Australia. Ongoing research should focus on large, multicentre controlled studies, the protective effect of vaccination, differential impacts from variants, pathobiological underpinnings, disease mechanisms to avoid severe and enduring impacts on the Australian economy. The lived experience of people with PACC is also essential to enable the design and implementation of effective models of care. VPACS brings a diverse group of people together to work on a shared vision of holistic and high-quality care, and collectively maximise their impact on outcomes for patients and the broader community. Post-acute COVID-19 condition (PACC) – also known as long COVID – is a serious and growing problem in primary health. This letter describes the work of the Victorian Post-Acute COVID-19 Study (VPACS) group, which promotes data linkage, evidence-based practice, sharing clinical experience and innovative research. Bringing together a diverse group of people to work on a shared vision for PACC management maximises their impact on outcomes for patients and the broader Australian community. [ABSTRACT FROM AUTHOR]

Introduction: Vaccinations against preventable respiratory infections such as Streptococcus pneumoniae and influenza are important in immunosuppressed solid organ transplant (SOT) recipients. Little is known about the role of age, race, ethnicity, sex, and sociodemographic factors including rurality, or socioeconomic status (SES) associated with vaccine uptake in this population. Methods: We conducted a population‐based study using the Rochester Epidemiology Project, a medical records linkage system, to assess socioeconomic and demographic factors associated with influenza and pneumococcal vaccination rates among adult recipients of solid organ transplantation (aged 19–64 years) living in four counties in southeastern Minnesota. Vaccination data were obtained from the Minnesota Immunization Information Connection from June 1, 2010 to June 30, 2020. Vaccination rate was assessed with Poisson and logistic regression models. Results: A total of 468 SOT recipients were identified with an overall vaccination rate of 57%–63% for influenza and 56% for pneumococcal vaccines. As expected, vaccination for pneumococcal vaccine positively correlated with influenza vaccination. Rural patients had decreased vaccination in both compared to urban patients, even after adjusting for age, sex, race, ethnicity, and SES. Although the population was mostly White and non‐Hispanic, neither vaccination differed by race or ethnicity, but influenza vaccination did by SES. Among organ transplant groups, liver and lung recipients were least vaccinated for influenza, and heart recipients were least up‐to‐date on pneumococcal vaccines. Conclusions: Rates of vaccination were below national goals. Rurality was associated with undervaccination. Further investigation is needed to understand and address barriers to vaccination among transplant recipients. [ABSTRACT FROM AUTHOR]

Linking records could serve as a useful tool for scientific research and as a facilitator for local policymaking. This article examines the challenges and opportunities for researchers to lawfully link routinely collected health and education data with cohort data of children when using it as a tool for scientific research in Portugal. Such linking can be lawfully conducted in Portugal if three requirements are met. First, data processing pursues a legitimate purpose, such as scientific research. Secondly, data linking complies with the legal obligations of research entities and researchers, acting as data controllers or processors, and it respects the rights of children as data subjects. Finally, data linking is based on the explicit written consent of those with parental responsibility for the child. So far, the implementation of the General Data Protection Regulation in Portugal has not facilitated record linkage. It is argued that further harmonised implementation of that Regulation across European Union and European Economic Area Member States, establishing a minimum shared denominator for record linkage in scientific research for the common good, including without explicit consent, is needed. [ABSTRACT FROM AUTHOR]

Background: This descriptive study assessed the completeness, agreement, and representativeness of ethnicity recording in the United Kingdom (UK) Clinical Practice Research Datalink (CPRD) primary care databases alone and, for those patients registered with a GP in England, when linked to secondary care data from Hospital Episode Statistics (HES). Methods: Ethnicity records were assessed for all patients in the May 2021 builds of the CPRD GOLD and CPRD Aurum databases for all UK patients. In analyses of the UK, English data was from combined CPRD-HES, whereas data from Northern Ireland, Scotland, and Wales drew from CPRD only. The agreement of ethnicity records per patient was assessed within each dataset (CPRD GOLD, CPRD Aurum, and HES datasets) and between datasets at the highest level ethnicity categorisation ('Asian', 'black', 'mixed', 'white', 'other'). Representativeness was assessed by comparing the ethnic distributions at the highest-level categorisation of CPRD-HES to those from the Census 2011 across the UK's devolved administrations. Additionally, CPRD-HES was compared to the experimental ethnic distributions for England and Wales from the Office for National Statistics in 2019 (ONS2019) and the English ethnic distribution from May 2021 from NHS Digital's General Practice Extraction Service Data for Pandemic Planning and Research with HES data linkage (GDPPR-HES). Results: In CPRD-HES, 81.7% of currently registered patients in the UK had ethnicity recorded in primary care. For patients with multiple ethnicity records, mismatched ethnicity within individual primary and secondary care datasets was < 10%. Of English patients with ethnicity recorded in both CPRD and HES, 93.3% of records matched at the highest-level categorisation; however, the level of agreement was markedly lower in the 'mixed' and 'other' ethnic groups. CPRD-HES was less proportionately 'white' compared to the UK Census 2011 (80.3% vs. 87.2%) and experimental ONS2019 data (80.4% vs. 84.3%). CPRD-HES was aligned with the ethnic distribution from GDPPR-HES ('white' 80.4% vs. 80.7%); however, with a smaller proportion classified as 'other' (1.1% vs. 2.8%). Conclusions: CPRD-HES has suitable representation of all ethnic categories with some overrepresentation of minority ethnic groups and a smaller proportion classified as 'other' compared to the UK general population from other data sources. CPRD-HES data is useful for studying health risks and outcomes in typically underrepresented groups. [ABSTRACT FROM AUTHOR]

Aims: It is becoming increasingly possible to obtain additional information about health survey participants, though not usually non-participants, via record linkage. We aimed to assess the validity of an assumption underpinning a method developed to mitigate non-participation bias. We use a survey in Finland where it is possible to link both participants and non-participants to administrative registers. Survey-derived alcohol consumption is used as the exemplar outcome. Methods: Data on participants (85.5%) and true non-participants of the Finnish Health 2000 survey (invited survey sample N =7167 aged 30-79 years) and a contemporaneous register-based population sample (N =496,079) were individually linked to alcohol-related hospitalisation and death records. Applying the methodology to create synthetic observations on non-participants, we created 'inferred samples' (participants and inferred non-participants). Relative differences (RDs) between the inferred sample and the invited survey sample were estimated overall and by education. Five per cent limits were used to define acceptable RDs. Results: Average weekly consumption estimates for men were 129 g and 131 g of alcohol in inferred and invited survey samples, respectively (RD –1.6%; 95% confidence interval (CI) –2.2 to –0.04%) and 35 g for women in both samples (RD –1.1%; 95% CI –2.4 to –0.8%). Estimates for men with secondary levels of education had the greatest RD (–2.4%; 95% CI –3.7 to –1.1%). Conclusions: The sufficiently small RDs between inferred and invited survey samples support the assumption validity and use of our methodology for adjusting for non-participation. However, the presence of some significant differences means caution is required. [ABSTRACT FROM AUTHOR]

The present study investigated linkages between multiple socio-economic vulnerabilities with infant and child mortality in India and its specific regions. Data from the National Family Health Survey (2015–16) was used for calculating the key-outcome variables, namely infant mortality and child mortality. The effective sample size for the study was 259,627. Bivariate analysis and binary logistic regression analysis were employed to examine three dimensions of vulnerabilities such as education, wealth, and caste on infant and child mortality. Children born to women with multiple-vulnerabilities were more likely to die than those born to non-vulnerable women. Women who were vulnerable in all the three-dimensions were more likely to have their children die as infants than those who were not vulnerable in any dimensions (predicted probabilities; 0.054 vs 0.026). The predicted probability for child mortality was 0.063 for women who were vulnerable and 0.028 for non-vulnerable women. [ABSTRACT FROM AUTHOR]

Objectives: Poor oral health, impacting health and wellbeing across the life‐course, is a costly and wicked problem. Data (or record) linkage is the linking of different sets of data (often administrative data gathered for non‐research purposes) that are matched to an individual and may include records such as medical data, housing information and sociodemographic information. It often uses population‐level data or 'big data'. Data linkage provides the opportunity to analyse complex associations from different sources for total populations. The aim of the paper is to explore data linkage, how it is important for oral health research and what promise it holds for the future. Methods: This is a narrative review of an approach (data linkage) in oral health research. Results: Data linkage may be a powerful method for bringing together various population datasets. It has been used to explore a wide variety of topics with many varied datasets. It has substantial current and potential application in oral health research. Conclusions: Use of population data linkage is increasing in oral health research where the approach has been very useful in exploring the complexity of oral health. It offers promise for exploring many new areas in the field. [ABSTRACT FROM AUTHOR]

Background and Aims: In 2016, direct-acting antiviral (DAA) treatment for hepatitis C (HCV) became available through Australia's universal health care system, with the aim of HCV elimination. We report real-world effectiveness of DAA HCV treatment in Australia from a clinically well-informed cohort, enriched for cirrhosis and prior HCV treatment. Methods: 3413 patients were recruited from 26 hospital liver clinics across Australia from February 2016 to June 2020. Clinical history and sustained viral response (SVR) were obtained from medical records and data linkage to the Australian Pharmaceutical Benefits Scheme. Factors associated with SVR were assessed by multivariable logistic regression (MVR). Results: At recruitment, 32.2% had cirrhosis (72.9% Child Pugh class B/C), and 19.9% were treatment experienced. Of the 2,939 with data, 93.3% confirmed SVR. 137 patients received second-line therapy. Patients with cirrhosis had lower SVR rate (88.4 vs. 95.8%; p < 0.001). On MVR, failure to achieve SVR was associated with Genotype 3 (adj-OR = 0.42, 95%CI 0.29–0.61), male gender (adj-OR = 0.49, 95%CI 0.31–0.77), fair/poor adherence (adj-OR = 0.52, 95%CI 0.28–0.94), cirrhosis (adj-OR = 0.57, 95%CI 0.36–0.88), FIB-4 > 3.25 (adj-OR = 0.52, 95%CI 0.33–0.83) and MELD score ≥ 20 (adj-OR = 0.25, 95%CI 0.08–0.80). Consistent results were seen in cirrhotic sub-analysis. Conclusions: Excellent SVR rates were achieved with DAAs in this real-world cohort of patients with chronic HCV infection. More advanced liver disease and clinician impression of poor adherence were associated with HCV treatment failure. Supports to improve liver fibrosis assessment skills for non-specialist DAA prescribers in the community and to optimize patient adherence are likely to enable more effective pursuit of HCV elimination in Australia. [ABSTRACT FROM AUTHOR]

BACKGROUND: Patients experiencing homelessness have higher rates of substance use and related mortality, often driven by opioid overdose. Conversely, opioid use disorder (OUD) is a leading risk factor for homelessness. Our goal was to test the efficacy of an electronic health record (EHR) screen in identifying this vulnerable population during hospitalization and to assess the feasibility of a bundled intervention in improving opioid safety. METHODS: We assessed patients' housing status, substance use, previous MOUD treatment, barriers to MOUD treatment and readiness to take MOUD in and out of the hospital. For each post discharge follow up call, patients were asked about their MOUD status, barriers accessing treatment, current substance use, and housing status. We also assessed team members perceptions and experiences of the study. RESULTS: We enrolled 32 patients with housing insecurity and OUD. The mean age was 44, the majority self-identified as male (78%), and mostly as White (56%) or Black (38%). At each follow up within the 6-months post-discharge, reach rates were low: 40% of enrollees answered at least 1 call and the highest reach rate (31% of patients) occurred at week 4. At the third and sixth-month follow ups, >50% of subjects still taking MOUD were also using opioids. conclusion: Our clinician augmented EHR screen accurately identified inpatients experiencing OUD and PEH. This intervention showed high rates of attrition among enrolled patients, even after providing cellphones. The majority of patients who were reached remained adherent to MOUD though they reported significant barriers. [ABSTRACT FROM AUTHOR]

Objective: To explore if pre-diagnosis sleep status is associated with overall survival (OS) of ovarian cancer (OC). Methods: This is a prospective cohort study of 853 OC patients newly diagnosed between 2015 and 2020. Sleep status was measured by the Pittsburgh Sleep Quality Index (PSQI). Vital status of patients was obtained through active follow-up and linkage to medical records and cancer registry. The Cox proportional hazards regression model was utilized to calculate hazard ratios (HRs) and 95% confidence intervals (CIs) for aforementioned associations. Results: During the follow-up period (median: 37.57 months, interquartile: 25.00 to 50.17 months), 123 (18.39%) OC patients died. The HR (95%CI) for OS of OC was 2.13 (1.42–3.18) for sleeping after 22:00, compared with sleeping before 22:00; 2.43 (1.64–3.62) for poor sleep quality, compared to good sleep quality; 2.26 (1.37–3.72) for late bed-early rise and 1.93 (1.09–3.42) for late bed-late rise, compared with early bed-early rise; 0.40 (0.24–0.67) for night sleep duration of ≥7.5 h/day, compared with 7–7.5 h/day; 0.53 (0.29–0.98) for total sleep duration of ≥8 h/day, compared with 7.5–8 h/day. Further, the interaction effects were significant between residual lesions and wake-up time, night bedtime, sleep pattern, and between total sleep duration and menopausal status, parity. Additionally, there was a significant curvilinear association between PSQI score and OS (p nonlinear <0.05). Conclusions: Pre-diagnosis longer total and night sleep duration were associated with better OS, whereas later sleeping time, poor sleep quality, and bad sleep patterns were associated with poor OS among OC survivors. [ABSTRACT FROM AUTHOR]

Objective: Most studies that examine psychiatric illness in people who offend have focused on incarcerated samples, with little known about the larger population of individuals with criminal justice system contact. We examine the overlap between proven offences and psychiatric diagnoses with an emphasis on experiences for Indigenous Australians. Methods: In a population-based birth cohort of 45,141 individuals born in Queensland, Australia, in 1990 (6.3% Indigenous), psychiatric diagnoses were identified from hospital admissions between ages 4/5 and 23/24 years and proven offences were identified from court records (spanning ages 10–24 years). Prevalence rates for offending, psychiatric diagnoses and their overlap were examined for Indigenous and non-Indigenous individuals. Associations between specific psychiatric diagnoses and types of offending were examined using logistic regressions. Results: There were 11,134 (24.7%) individuals with a finalised court appearance, 2937 (6.5%) with a diagnosed psychiatric disorder and 1556 (3.4%) with a proven offence and diagnosed psychiatric disorder, with Indigenous Australians significantly overrepresented across all outcomes. Compared with non-Indigenous Australians, Indigenous Australians were younger at their first court finalisation (Cohen's d = −0.62, 95% confidence interval = [−0.67, −0.57]), experienced a higher number of finalisations (d = 0.94, 95% confidence interval = [0.89, 1.00]) and offences (d = 0.64, 95% confidence interval = [0.59, 0.69]) and were more likely to receive custodial (d = 0.41, 95% confidence interval = [0.36, 0.46]) or supervised (d = 0.55, 95% confidence interval = [0.50, 0.60]) sentences. The overlap between offending and psychiatric illness was more pronounced for Indigenous Australians compared with non-Indigenous Australians (14.8% vs 2.7%). Substance use disorders were the most prevalent psychiatric diagnosis among individuals with a court finalisation (9.2%). Conclusions: Indigenous Australians were significantly overrepresented in court finalisations and psychiatric diagnoses. Indigenous Australians with a psychiatric diagnosis were at highest risk of experiencing a court appearance, emphasising the importance of culturally appropriate mental health responses being embedded into the criminal justice system. [ABSTRACT FROM AUTHOR]

The coronavirus disease 2019 (COVID-19) pandemic has underscored the importance of observational studies of real-world vaccine effectiveness (VE) to help answer urgent public health questions. One approach to rapidly answering questions about real-world VE relies on linking data from a population-based registry of vaccinations with a population-based registry of health outcomes. Here we consider some potential sources of bias in linked registry studies, including incomplete reporting to the registries, errors in linking individuals between registries, and errors in the assumed population size of the catchment area of the registries. We show that the direction of the bias resulting from one source of error by itself is predictable. However, if multiple sources of error are present, the direction of the bias can be either upward or downward. The biases can be so strong as to make harmful vaccines appear effective. We provide explicit formulas with which to quantify and adjust for multiple biases in estimates of VE which could be used in sensitivity analyses. While this work was motivated by COVID-19 vaccine questions, the results are generally applicable to studies that link population-based exposure registries with population-based case registries to estimate relative risks of exposures. [ABSTRACT FROM AUTHOR]

Youth in special education have complex needs that are supported across multiple systems. Our research investigates the use of adult income assistance, as one structure that supports youth as they transition to adulthood. We created a cohort of youth (5–22 years old) using linked administrative data from British Columbia government ministries from 1996 to 2018. Youth were grouped by their special education funding (most to least; Level 1, Level 2, Level 3, Unfunded, and no special education). We investigated (1) youth characteristics and service use patterns, (2) which youth used income supports after the child‐to‐adult transition (19–22 years old), and what youth characteristics and service use patterns were associated with use, and (3) how much income support they used (CAD$). Of 174,527 youth, 254 (0.1%) were Level 1, 6020 (3.4%) were Level 2, 4409 (2.5%) were Level 3, 21,232 (12.2%) were Unfunded, and 142,612 (81.7%) were not in special education. Youth assigned higher funding levels, compared to lower levels, generally had increased service use, and in the transition to adult services were more likely to use income supports, and received more income support. An important exception was youth with serious behavioural/mental health special education funding (Level 3), who had increased service use for their level of funding, but received less income support due to a reliance on Temporary versus Disability Assistance. Youth that received an accredited diploma were less likely to use income supports. Factors related to the use of income supports are further described. This study highlights differences in access to income support when youth transition to adult services and considerations around equitable access to support. [ABSTRACT FROM AUTHOR]

Case reports of severe acute liver injury (ALI) following COVID-19 vaccination have recently been published. We evaluated the risks of ALI following COVID-19 vaccination (BNT162b2 or CoronaVac). We conducted a modified self-controlled case series analysis using the vaccination records in Hong Kong with data linkage to electronic medical records from a territory-wide healthcare database. Incidence rate ratios (IRRs) for ALI outcome in the 56-day period following first and second doses of COVID-19 vaccines in comparison to the non-exposure period were estimated and compared to the ALI risk in patients with SARS-CoV-2 infection. Among 2,343,288 COVID-19 vaccine recipients who were at risk, 4,677 patients developed ALI for the first time between 23rd February 2021 to 30th September 2021. The number of ALI cases within 56 days after the first and second dose of vaccination were 307 and 521 (335 and 334 per 100,000 person-years) for BNT162b2, and 304 and 474 (358 and 403 per 100,000 person-years) for CoronaVac, respectively, compared to 32,997 ALI cases per 100,000 person-years among patients within 56 days of SARS-CoV-2 infection. Compared to the non-exposure period, no increased risk was observed in the 56-day risk period for first (IRR 0.800; 95% CI 0.680–0.942) and second (IRR 0.944; 95% CI 0.816–1.091) dose of BNT162b2, or first (IRR 0.689; 95% CI 0.588–0.807) and second (IRR 0.905; 95% CI 0.781–1.048) dose of CoronaVac. There were no severe or fatal cases of ALI following COVID-19 vaccination. There was no evidence of an increased risk of ALI associated with BNT162b2 or CoronaVac vaccination. Based on all current available evidence from previous studies and our study, the benefit of mass vaccination far outweighs the ALI risk from vaccination. There have been some recent reports that COVID-19 vaccination could be associated with acute liver injury. In our study, we found no evidence that COVID-19 vaccination increased the risk of acute liver injury, which was much more common after SARS-CoV-2 infection than after vaccination. Hence, our study provides further data indicating that the benefits of mass COVID-19 vaccination outweigh the potential risks. [Display omitted] • Incidence of acute liver injury following COVID-19 vaccination is very low and not increased compared to the non-exposure period. • Most post-vaccination acute liver injury was mild and self-limiting, with no increase in risk of new-onset chronic liver disease. • Acute liver injury is more common after SARS-CoV-2 infection than following COVID-19 vaccination. • The potential benefits of mass vaccination against COVID-19 outweigh the risk of liver injury from vaccination. [ABSTRACT FROM AUTHOR]

The predicted risk and timeline to progression to liver-related outcomes in the population with NAFLD are not well-characterized. We aimed to examine the risk and time to progression to cirrhosis, hepatic decompensation and death in a contemporary population over a long follow-up period, to obtain information to guide endpoint selection and sample size calculations for clinical trials on NAFLD-related cirrhosis. This is a retrospective study of prospectively collected data in a medical record linkage system, including all adults diagnosed with NAFLD between 1996-2016 by clinical, biochemical and radiological criteria in Olmsted County, Minnesota and followed until 2019. Liver-related outcomes and death were ascertained and validated by individual medical record review. Time and risk of progression from NAFLD to cirrhosis to decompensation and death were assessed using multistate modeling. A total of 5,123 individuals with NAFLD (median age 52 years, 53% women) were followed for a median of 6.4 (range 1-23) years. The risk of progression was as follows: from NAFLD to cirrhosis: 3% in 15 years; compensated cirrhosis to first decompensation: 33% in 4 years (8%/year); first decompensation to ≥2 decompensations: 48% in 2 years. Albumin, bilirubin, non-bleeding esophageal varices and diabetes were independent predictors of decompensation. Among the 575 deaths, 6% were liver related. Therapeutic trials in compensated cirrhosis would require enrolment of a minimum of 2,886 individuals followed for >2 years to detect at least a 15% relative decrease in liver-related endpoints. In this population-based cohort with 23 years of longitudinal follow-up, NAFLD was slowly progressive, with liver-related outcomes affecting only a small proportion of people. Large sample sizes and long follow-up are required to detect reductions in liver-related endpoints in clinical trials. For patients with compensated non-alcoholic steatohepatitis-related cirrhosis, the time spent in this state and the risk of progression to decompensation are not well-known in the population. We examined the clinical course of a large population-based cohort over 23 years of follow-up. We identified that adults with compensated cirrhosis spend a mean time of 4 years in this state and have a 10% per year risk of progression to decompensation or death. The risk of further progression is 3-fold higher in adults with cirrhosis and one decompensating event. These results are reflective of placebo arm risks in drug clinical trials and are essential in the estimation of adequate sample sizes. [Display omitted] • Population-derived estimates of progression risk are essential in estimating the sample size for interventional trials in NAFLD. • Among adults with compensated NASH cirrhosis, the risk of progression to decompensation or death is 10% per year. • Among adults with first decompensation, the risk of progression to subsequent liver events of death is 32% per year. • Trials in compensated cirrhosis would require at least 2,886 participants followed for ≥2 years to detect a ≥15% relative decrease in liver-related endpoints. [ABSTRACT FROM AUTHOR]

News media, popular periodicals, and scientific literature describe the growth in health-related data as explosive.[1] As the availability of data grows, and methods to protect the privacy and improve sharing continue to develop, clinical research and epidemiologic studies related to pregnancy and perinatal outcomes become increasingly easier to conduct. Ogero and colleagues[7] evaluate and recalibrate four prognostic models in big data generated by 20 public county referral hospitals in Kenya aiming to improve predictions of in-hospital child mortality. However, this term may be too restrictive in the context of big data in perinatal epidemiology. While some approaches can work well regardless of the size of the data, some methods are particularly useful for analysing big data, and simultaneously big data can support the use of some methods. [Extracted from the article]

Objective: The aim of this study was to determine whether a secure, privacy-preserving record linkage (PPRL) methodology can be implemented in a scalable manner for use in a large national clinical research network. Results: We established the governance and technical capacity to support the use of PPRL across the National Patient-Centered Clinical Research Network (PCORnet®). As a pilot, four sites used the Datavant software to transform patient personally identifiable information (PII) into de-identified tokens. We queried the sites for patients with a clinical encounter in 2018 or 2019 and matched their tokens to determine whether overlap existed. We described patient overlap among the sites and generated a "deduplicated" table of patient demographic characteristics. Overlapping patients were found in 3 of the 6 site-pairs. Following deduplication, the total patient count was 3,108,515 (0.11% reduction), with the largest reduction in count for patients with an "Other/Missing" value for Sex; from 198 to 163 (17.6% reduction). The PPRL solution successfully links patients across data sources using distributed queries without directly accessing patient PII. The overlap queries and analysis performed in this pilot is being replicated across the full network to provide additional insight into patient linkages among a distributed research network. [ABSTRACT FROM AUTHOR]

Background Children with chronic medical conditions are at higher risk of invasive pneumococcal disease (IPD), but little is known about the effectiveness of the primary course of pneumococcal conjugate vaccine (PCV) in these children. Methods A cohort born in 2001–2004 from two Australian states and identified as medically at-risk (MAR) of IPD either using ICD-coded hospitalizations (with conditions of interest identified by 6 months of age) or linked perinatal data (for prematurity) were followed to age 5 years for notified IPD by serotype. We categorized fully vaccinated children as either receiving PCV dose 3 by <12 months of age or ≥1 PCV dose at ≥12 months of age. Cox proportional hazard modeling was used to estimate hazard ratios (HRs), adjusted for confounders, and vaccine effectiveness (VE) was estimated as (1-HR) × 100. Results A total of 9220 children with MAR conditions had 53 episodes of IPD (43 vaccine-type); 4457 (48.3%) were unvaccinated and 4246 (46.1%) were fully vaccinated, with 1371 (32.3%) receiving dose 3 by 12 months and 2875 (67.7%) having ≥1 dose at ≥12 months. Estimated VE in fully vaccinated children was 85.9% (95% CI: 33.9–97.0) against vaccine-type IPD and 71.5% (95% CI: 26.6–88.9) against all-cause IPD. Conclusion This is the first population-based study evaluating the effectiveness of PCV in children with MAR conditions using record linkage. Our study provides evidence that the VE for vaccine-type and all-cause IPD in MAR children in Australia is high and not statistically different from previously reported estimates for the general population. This method can be replicated in other countries to evaluate VE in MAR children. [ABSTRACT FROM AUTHOR]

Objectives: The detection of young people at high risk for psychotic disorders has been somewhat narrowly focused on overt symptom‐based markers that reflect mild reality distortion (e.g., psychotic‐like experiences), or prodromal syndromes that are proximal to psychosis onset. The concept of schizotypy represents a broader framework for investigating risk for schizophrenia (and other disorders) in childhood, before the onset of prodromal or overt symptoms. We sought to detect profiles of risk for psychosis (schizotypy) in a general population sample of 22,137 Australian children aged 11–12 years, and to determine early life risk factors associated with these profiles from data available in linked records (registers). Methods: Fifty‐nine self‐reported items were used as indicators of schizotypy across six broad domains; z‐scores for each domain were subjected to latent profile analyses (LPA). A series of multinomial logistic regressions was used to examine the association between resulting profile (class) membership and several childhood and parental risk factors, and the proportion of children with mental disorders among each schizotypy profile was examined. Results: The LPA revealed three person‐centred profiles referred to as True Schizotypy (n = 1,323; 6.0%), Introverted Schizotypy (n = 4,473; 20.2%), and Affective Schizotypy (n = 4,261; 19.2%), as well as a group of children showing no risk (n = 12,080; 54.6%). Prior exposure to perinatal and familial adversities including childhood maltreatment, as well as poor early childhood development and academic functioning, was variously associated with all risk groups. There was a higher proportion of childhood mental disorder diagnoses among children in the True Schizotypy group, relative to other profiles. Conclusion: Subtle differences in the pattern of exposures and antecedents among schizophrenia liability profiles in childhood may reflect distinct pathogenic pathways to psychotic or other mental illness. Practitioner points: Children aged 11–12 years report characteristics of schizotypy which can be classified into three distinct profiles that may represent different pathological processes towards later mental ill‐health.Early life exposure to perinatal and familial adversities including childhood maltreatment, early childhood developmental vulnerability, and poor academic functioning predict membership in all three childhood schizotypy profiles.Latent liability for schizophrenia (and potentially other mental disorders) may be represented by different profiles of functioning observable in childhood. [ABSTRACT FROM AUTHOR]

In England, not all cancer drugs are routinely funded; new medicines are first appraised by the National Institute for Health and Care Excellence. Funding can be temporarily given through the Cancer Drugs Fund while further information is collected. The Systemic Anti-Cancer Therapy (SACT) dataset collects information on all patients receiving chemotherapy in England. To date, little has been published, despite concerns that real-world effectiveness of medicines may be inferior to that seen in clinical trials. The aim of the present study was to establish the feasibility of using our local copy of routinely collected SACT data for the evaluation of outcomes, using the data within the context of gastrointestinal cancers. We used our local SACT dataset submissions from three National Health Service trusts, with a reproducible method of data linkage, to undertake a cohort analysis of treatment duration and overall survival for cetuximab, panitumumab, trifluridine/tipiracil (all three in colorectal cancer), sorafenib (in hepatocellular cancer) and nab-paclitaxel (nanoparticle albumin-bound paclitaxel) with gemcitabine (in pancreatic cancer) for all patients treated from May 2016 to March 2021. In our population, epidermal growth factor receptor inhibitors and trifluridine/tipiracil and sorafenib performed similarly to expected but nab-paclitaxel with gemcitabine in pancreatic cancer seemed to be no better than gemcitabine alone, when given within the current funding arrangements in England. Our results support the publication of national outcome data. If these results are confirmed on a larger cohort, it would support the reappraisal of certain drugs and provide further evidence to clinicians and patients when deciding the best treatment. • This study used local data and a simple IT system to analyse real-world outcomes. • Cetuxumab, panitumumab, sorafenib and trifluridine/tipiracil outcomes matched trials. • nab-paclitaxel in pancreatic cancer had poorer outcomes than expected. [ABSTRACT FROM AUTHOR]

Objectives Despite established standards and guidelines, substantial variation remains in the delivery of hip fracture care across the United Kingdom. We aimed to determine which hospital-level organisational factors predict adverse patient outcomes in the months following hip fracture. Methods We examined a national record-linkage cohort of 178,757 patients aged ≥60 years who sustained a hip fracture in England and Wales in 2016–19. Patient-level hospital admissions datasets, National Hip Fracture Database and mortality data were linked to metrics from 18 hospital-level organisational-level audits and reports. Multilevel models identified organisational factors, independent of patient case-mix, associated with three patient outcomes: length of hospital stay (LOS), 30-day all-cause mortality and emergency 30-day readmission. Results Across hospitals mean LOS ranged from 12 to 41.9 days, mean 30-day mortality from 3.7 to 10.4% and mean readmission rates from 3.7 to 30.3%, overall means were 21.4 days, 7.3% and 15.3%, respectively. In all, 22 organisational factors were independently associated with LOS; e.g. a hospital's ability to mobilise >90% of patients promptly after surgery predicted a 2-day shorter LOS (95% confidence interval [CI]: 1.2–2.6). Ten organisational factors were independently associated with 30-day mortality; e.g. discussion of patient experience feedback at clinical governance meetings and provision of prompt surgery to >80% of patients were each associated with 10% lower mortality (95%CI: 5–15%). Nine organisational factors were independently associated with readmissions; e.g. readmissions were 17% lower if hospitals reported how soon community therapy would start after discharge (95%CI: 9–24%). Conclusions Receipt of hip fracture care should be reliable and equitable across the country. We have identified multiple, potentially modifiable, organisational factors associated with important patient outcomes following hip fracture. [ABSTRACT FROM AUTHOR]

Introduction: Learning health systems can help estimate chronic disease prevalence through distributed data networks (DDNs). Concerns remain about bias introduced to DDN prevalence estimates when individuals seeking care across systems are counted multiple times. This paper describes a process to deduplicate individuals for DDN prevalence estimates. Methods: We operationalized a two‐step deduplication process, leveraging health information exchange (HIE)‐assigned network identifiers, within the Colorado Health Observation Regional Data Service (CHORDS) DDN. We generated prevalence estimates for type 1 and type 2 diabetes among pediatric patients (0‐17 years) with at least one 2017 encounter in one of two geographically‐proximate DDN partners. We assessed the extent of cross‐system duplication and its effect on prevalence estimates. Results: We identified 218 437 unique pediatric patients seen across systems during 2017, including 7628 (3.5%) seen in both. We found no measurable difference in prevalence after deduplication. The number of cases we identified differed slightly by data reconciliation strategy. Concordance of linked patients' demographic attributes varied by attribute. Conclusions: We implemented an HIE‐dependent, extensible process that deduplicates individuals for less biased prevalence estimates in a DDN. Our null pilot findings have limited generalizability. Overlap was small and likely insufficient to influence prevalence estimates. Other factors, including the number and size of partners, the matching algorithm, and the electronic phenotype may influence the degree of deduplication bias. Additional use cases may help improve understanding of duplication bias and reveal other principles and insights. This study informed how DDNs could support learning health systems' response to public health challenges and improve regional health. [ABSTRACT FROM AUTHOR]

Context: Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management.Objective: To describe the design and lessons learned regarding the data management system for the Pediatric Palliative Care Research Network's Shared Data and Research (SHARE) project, a multicenter prospective cohort study of children receiving pediatric palliative care (PPC) and their parents, and to describe important attributes of this system, with specific considerations for the design of future studies.Methods: The SHARE study consists of 643 PPC patients and up to two of their parents who enrolled from April 2017 to December 2020 at seven children's hospitals across the United States. Data regarding demographics, patient symptoms, goals of care, and other characteristics were collected directly from parents or patients at 6 timepoints over a 24-month follow-up period and stored electronically in a centralized location. Using medical record numbers, primary collected data was linked to administrative hospitalization data containing diagnostic and procedure codes and other data elements. Important attributes of the data infrastructure include linkage of primary and administrative data; centralized availability of multilingual questionnaires; electronic data collection and storage system; time-stamping of instrument completion; and a separate but connected study administrative database used to track enrollment.Conclusions: Investigators planning future multicenter prospective cohort studies can consider attributes of the data infrastructure we describe when designing their data management system. [ABSTRACT FROM AUTHOR]

Objectives. To assess linkages of patient data from a health care system in the southeastern United States to microdata from the American Community Survey (ACS) with the goal of better understanding health disparities and social determinants of health in the population. Methods. Once a data use agreement was in place, a stratified random sample of approximately 200 000 was drawn of patients aged 25 to 74 years with at least 2 visits between January 1, 2016, and December 31, 2019. Information from the sampled electronic health records (EHRs) was transferred securely to the Census Bureau, put through the Census Person Identification Validation System to assign Protected Identification Keys (PIKs) as unique identifiers wherever possible. EHRs with PIKs assigned were then linked to 2001–2017 ACS records with a PIK. Results. PIKs were assigned to 94% of the sampled patients. Of patients with PIKs, 15.5% matched to persons sampled in the ACS. Conclusions. Linking data from EHRs to ACS records is feasible and, with adjustments for differential coverage, will advance understanding of social determinants and enhance the ability of integrated delivery systems to reflect and affect the health of the populations served. (Am J Public Health. 2022;112(6):923–930. https://doi.org/10.2105/AJPH.2022.306783) [ABSTRACT FROM AUTHOR]