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BackgroundSibling resemblance in crime may be due to genetic relatedness, shared environment, and/or the interpersonal influence of siblings on each other. This latter process can be understood as a type of ‘peer effect’ in that it is based on social learning between individuals occupying the same status in the social system (family). Building on prior research, we hypothesized that sibling pairs that resemble peer relationships the most, i.e., same-sex siblings close in age, exhibit the most sibling resemblance in crime.MethodsDrawing on administrative microdata covering Finnish children born in 1985–97, we examined 213 911 sibling pairs, observing the recorded criminality of each sibling between ages 11 and 20. We estimated multivariate regression models controlling for individual and family characteristics, and employed fixed-effects models to analyze the temporal co-occurrence of sibling delinquency.ResultsAmong younger siblings with a criminal older sibling, the adjusted prevalence estimates of criminal offending decreased from 32 to 25% as the age differences increased from less than 13 months to 25–28 months. The prevalence leveled off at 23% when age difference reached 37–40 months or more. These effects were statistically significant only among same-sex sibling pairs (p < 0.001), with clear evidence of contemporaneous offending among siblings with minimal age difference.ConclusionsSame-sex siblings very close in age stand out as having the highest sibling resemblance in crime. This finding suggests that a meaningful share of sibling similarity in criminal offending is due to a process akin to peer influence, typically flowing from the older to the younger sibling.

Aims Guidelines recommend the use of an implantable cardioverter‐defibrillator (ICD) and/or cardiac resynchronization therapy (CRT) device based on the results of randomized controlled trials (RCTs), typically with selected patients and short follow‐up. Methods and results We describe the 5 year survival rate and use of hospital services following ICD and CRT implantation in England from April 2011 to March 2013 using the national hospital administrative database covering emergency department visits, inpatient admissions, and clinic appointments, linked to the national death register. Five‐year survival was 64% after ICD implantation and 58% after CRT implantation, with median survival times of 6.8 and 6.2 years, respectively. Hospital use was high in both device groups, for the 5 years prior and after implantation, peaking around the implantation date. Most hospital activity was not primarily related to heart failure. Healthcare costs were dominated by admissions, but emergency department and clinic activity were both high. Only the CRT group saw total per‐patient costs fall after the index month (implantation), driven by a slight fall in the heart failure admission rate. Patients were typically older than in the trials, but with similar co‐morbidity except for substantially more atrial fibrillation and less dementia. Survival and device complications were similar to the RCTs. Conclusions Clinical and cost‐effectiveness assessments of ICD and CRT implantation are supported by real‐world data, although the prevalence of atrial fibrillation remains substantially higher than in the RCTs.

Objective This study aimed to provide population-level data regarding trends in multimorbidity over 13 years. Methods We linked provincial health administrative data in Ontario, Canada, to create 3 cross-sectional panels of residents of any age in 2003, 2009, and 2016 to describe: (i) 13-year trends in multimorbidity prevalence and constellations among residents and across age, sex, and income; and (ii) chronic condition clusters. Multimorbidity was defined as having at least any 2 of 18 selected conditions, and further grouped into levels of 2, 3, 4, or 5 or more conditions. Age-sex standardized multimorbidity prevalence was estimated using the 2009 population as the standard. Clustering was defined using the observed combinations of conditions within levels of multimorbidity. Results Standardized prevalence of multimorbidity increased over time (26.5%, 28.8%, and 30.0% across sequential panels), across sex, age, and area-based income. Females, older adults and those living in lower income areas exhibited higher rates in all years. However, multimorbidity increased relatively more among males, younger adults, and those with 4 or 5 or more conditions. We observed numerous and increasing diversity in disease clusters, namely at higher levels of multimorbidity. Conclusion Our study provides relevant and needed population-based information on the growing burden of multimorbidity, and related socio-demographic risk factors. Multimorbidity is markedly increasing among younger age cohorts. Also, there is an increasing complexity and lack of common clustering patterns at higher multimorbidity levels. Supplementary Information The online version contains supplementary material available at 10.17269/s41997-021-00474-y.

Objective: The aim of this study was to determine sex specific differences in the invasive treatment of symptomatic peripheral arterial occlusive disease (PAOD) between member states participating in the VASCUNET and International Consortium of Vascular Registries., Methods: Data on open surgical revascularisation and peripheral vascular intervention (PVI) of symptomatic PAOD from 2010 to 2017 were collected from population based administrative and registry data from 11 countries. Differences in age, sex, indication, and invasive treatment modality were analysed., Results: Data from 11 countries covering 671 million inhabitants and 1 164 497 hospitalisations (40% women, mean age 72 years, 49% with intermittent claudication, 54% treated with PVI) in Europe (including Russia), North America, Australia, and New Zealand were included. Patient selection and treatment modality varied widely for the proportion of female patients (23% in Portugal and 46% in Sweden), the proportion of patients with claudication (6% in Italy and 69% in Russia), patients’ mean age (70 years in the USA and 76 years in Italy), the proportion of octogenarians (8% in Russia and 33% in Sweden), and the proportion of PVI (24% in Russia and 88% in Italy). Numerous differences between females and males were observed in regard to patient age (72 vs. 70 years), the proportion of octogenarians (28% vs. 15%), proportion of patients with claudication (45% vs. 51%), proportion of PVI (57% vs. 51%), and length of hospital stay (7 days vs. 6 days)., Conclusion: Remarkable differences regarding the proportion of peripheral vascular interventions, patients with claudication, and octogenarians were seen across countries and sexes. Future studies should address the underlying reasons for this, including the impact of national societal guidelines, reimbursement, and differences in health maintenance., peer-reviewed

Background Under the Children Act 1989, local authorities in Wales, UK, can issue care proceedings if they are concerned about the welfare of a child, which can lead to removal of a child from parents. For mothers at risk of child removal, timely intervention during pregnancy may avert the need for this and improve maternal/fetal health; however, little is known about this specific population during the antenatal period. The study examined maternity characteristics of mothers whose infants were subject to care proceedings, with the aim of informing preventative interventions targeted at high risk mothers. Methods Anonymised administrative data from Cafcass Cymru, who provide child-focused advice and support for family court proceedings in Wales, were linked to population-based maternity and health records held within the Secure Anonymised Information Linkage Databank. Linked data were available for 1111 birth mothers of infants involved in care proceedings between 2015 and 2018. Findings were benchmarked with reference to an age-deprivation-matched comparison group (n = 23,414), not subject to care proceedings but accessing maternity services during this period. Demographic characteristics, maternal health, reproductive history, interaction with midwifery services, and pregnancy and birth outcomes were examined. Descriptive and statistical tests of independence were used. Results Half of the women in the cohort (49.4%) resided in the most deprived areas. They were more likely to be younger at entry to motherhood (63.5% Conclusion This novel linkage study highlights multiple vulnerabilities experienced by pregnant mothers who have experienced care proceedings concerning an infant. Policy and practice colleagues require a clearer picture of women’s needs if child protection and health services are to offer effective services which prevent the need for family court proceedings and infant removal.

Background Emergency department crowding may impact patient and provider outcomes. We describe emergency department crowding metrics based on presentations by children to different categories of high volume emergency departments in Alberta, Canada. Methods This population-based retrospective study extracted all presentations made by children (age Results About half (51.2%) of the 1,124,119 presentations were made to the two academic/teaching emergency departments. Males presented more than females (53.6% vs 46.4%) and the median age was 5 years. Pediatric presentations to the three categories of emergency departments had mostly similar characteristics; however, urban and academic/teaching emergency departments had more severe triage scores and academic/teaching emergency departments had higher admissions. Across all emergency departments, the medians of the metrics for time to physician initial assessment, length of stay for discharges and for admission were 1h11min, 2h21min, and 6h29min, respectively. Generally, regional hospitals had shorter times than urban and academic/teaching hospitals. Conclusions Pediatric presentations to high volume emergency departments in this province suggest similar delays to see providers; however, length of stay for discharges and admissions were shorter in regional emergency departments. Crowding is more common in urban and especially academic emergency departments and the impact of crowding on patient outcomes requires further study.

Background Clinical indices to characterize the severity of inflammatory bowel disease (IBD) are widely used in clinical trials and real-world practice. However, there are few validated instruments for assessing IBD severity in administrative claims-based studies. Methods Patients (18–89 years) diagnosed with ulcerative colitis (UC) or Crohn’s disease (CD) and receiving ≥1 prescription claim for IBD therapy were identified using administrative claims data from the Optum Clinformatics, IMS PharMetrics, and Truven MarketScan databases (January 1, 2013–September 30, 2017). Regression modeling identified independent predictors of IBD-related hospitalization (inpatient stay or emergency department visit resulting in hospitalization), which were used to develop IBD severity indices. The index was validated against all-cause hospitalization and total cost and IBD-related hospitalization and total cost. Results There were 51,767 patients diagnosed with UC (n = 30,993) or CD (n = 20,774) who were initiated treatment with IBD therapy. Independent predictors of IBD-related hospitalization were Charlson Comorbidity Index score >1, anemia, weight loss, intravenous corticosteroid use, prior gastrointestinal-related emergency department visit and hospitalization, and unspecified disease location or more extensive disease. Female sex, renal comorbidities, intestinal fistula, and stricture were additional risk factors for patients with CD, whereas age Conclusions These validated UC and CD severity indices can be used to predict IBD-related outcomes using administrative claims databases.

Objectives: Large secondary databases, such as those containing insurance claims data, are increasingly being used to compare the effects and costs of treatments in routine clinical practice. Despite their appeal, however, caution must be exercised when using these data. In this study, we aimed to identify and assess the methodological quality of studies that used claims data to compare the effectiveness, costs, or cost-effectiveness of systemic therapies for breast cancer. Methods: We searched Embase, the Cochrane Library, Medline, Web of Science, and Google Scholar for English-language publications and assessed the methodological quality using the Good Research for Comparative Effectiveness principles. This study was registered with the International Prospective Register of Systematic Reviews (PROSPERO) under number CRD42018103992. Results: We identified 1251 articles, of which 106 met the inclusion criteria. Most studies were conducted in the United States (74%) and Taiwan (9%) and were based on claims data sets (35%) or claims data linked to cancer registries (58%). Furthermore, most included large samples (mean 17 130 patients) and elderly patients, and they covered various outcomes (eg, survival, adverse events, resource use, and costs). Key methodological shortcomings were the lack of information on relevant confounders, the risk of immortal time bias, and the lack of information on the validity of outcomes. Only a few studies performed sensitivity analyses. Conclusions: Many comparative studies of cost, effectiveness, and cost-effectiveness have been published in recent decades based on claims data, and the number of publications has increased over time. Despite the availability of guidelines to improve quality, methodological issues persist and are often inappropriately addressed or reported.

Introduction Appropriateness is an essential element of quality of care. Several methods and tools have been developed to measure the appropriateness of care, however, none of these could be used to systematically support providers in keeping the appropriateness under control. Our study aimed to develop a framework to evaluate the appropriateness of care that took into account four dimensions of appropriateness: clinical dimension, equity, service delivery model, outcome. Methods We employed mixed-method approaches. These included a retrospective analysis of administrative data collected from Kinetika Sardinia (Italy) and a qualitative analysis of stakeholders’ experiences and perspectives aimed at supporting data collection, identification of improvement actions and definition of performance indicators. We used arthrodesis as a paradigmatic example of potentially inappropriate elective surgery. Results We collected data from 2,584 patients that underwent arthrodesis between January 1, 2010 and April 30, 2015. Based on the analysis and the exchanges with professionals, we identified 11 improvement actions. Monitoring and evaluation actions were finally conducted for 171 patients that underwent spinal fusion during the first semester of 2016 in order to assess if the improvement actions identified were put into practice and acquired desirable outcomes. Conclusions Our work provides a definition of appropriateness that goes beyond the clinical perspective and includes other perspectives (equity, service delivery and outcome); develops a framework and an approach that can be a valid help to systematically assess the appropriateness of elective surgery, adopt improvement actions, and monitor their impact; discusses what are the competencies necessary for measuring the appropriateness.

BackgroundChildren with medical complexity (CMC) denotes the profile of a child with diverse acute and chronic conditions, making intensive use of the healthcare services and with special health and social needs. Previous studies show that CMC are also affected by the socioeconomic position (SEP) of their family. The aim of this study is to describe the pathologic patterns of CMC and their socioeconomic inequalities in order to better manage their needs, plan healthcare services accordingly, and improve the care models in place.MethodsCross-sectional study with latent class analysis (LCA) of the CMC population under the age of 15 in Catalonia in 2016, using administrative data. LCA was used to define multimorbidity classes based on the presence/absence of 57 conditions. All individuals were assigned to a best-fit class. Each comorbidity class was described and its association with SEP tested. The Adjusted Morbidity Groups classification system (Catalan acronym GMA) was used to identify the CMC. The main outcome measures were SEP, GMA score, sex, and age distribution, in both populations (CMC and non-CMC) and in each of the classes identified.Results71% of the CMC population had at least one parent with no employment or an annual income of less than €18,000. Four comorbidity classes were identified in the CMC: oncology (36.0%), neurodevelopment (13.7%), congenital and perinatal (19.8%), and respiratory (30.5%). SEP associations were: oncology OR 1.9 in boys and 2.0 in girls; neurodevelopment OR 2.3 in boys and 1.8 in girls; congenital and perinatal OR 1.7 in boys and 2.1 in girls; and respiratory OR 2.0 in boys and 2.0 in girls.ConclusionsOur findings show the existence of four different patterns of comorbidities in CMC and a significantly high proportion of lower SEP children in all classes. These results could benefit CMC management by creating more efficient multidisciplinary medical teams according to each comorbidity class and a holistic perspective taking into account its socioeconomic vulnerability.

Background Single-center comparative effectiveness studies evaluating outcomes that can occur posthospitalization may become biased if outcomes diagnosed at other facilities are not ascertained. Administrative datasets that link patients' records across facilities may improve outcome ascertainment. Objective To determine whether use of linked administrative data significantly augments thromboembolic outcome ascertainment. Research design Retrospective cohort study. Subjects Patients with an acute isolated calf deep vein thrombosis (DVT) diagnosed at 1 Californian center during 2010-2013. Measures Proximal DVT or pulmonary embolism (PE) within 180 days. We ascertained outcomes from linked California hospitalization, emergency department, and ambulatory surgery data and compared this information to outcomes previously identified from review of the center's medical records. Results Among 384 patients with an isolated calf DVT, 333 could be linked to longitudinal administrative data records. Ten patients had a possible proximal DVT or PE (4 more clearly so) from administrative data; all were unknown from medical record review. Eleven patients with known outcomes from medical record review had no outcome from administrative data. The adjusted odds ratio of proximal DVT or PE with therapeutic anticoagulation attenuated from 0.33 [95% confidence interval (CI), 0.12-0.87] using only medical record review to 0.64 (95% CI, 0.29-1.40) using both medical record review and possible outcomes from administrative data. Restricting the outcome to diagnoses clearly involving proximal DVT or PE, the adjusted odds ratio was 0.46 (95% CI, 0.19-1.10). Conclusions Use of linked hospital administrative data augmented detection of outcomes but imperfect linkage, nonspecific diagnoses, and documentation/coding errors introduced uncertainty regarding the accuracy of outcome ascertainment.

Background: Recent research found that physicians who completed medical school training at top-ranked U.S. medical schools prescribed fewer opioids than those trained at lower ranked schools, suggesting that physician training may play a role in the opioid epidemic. We replicated this analysis to understand whether this finding holds for Ontario, Canada. Methods: We used data on all opioid prescriptions written by Ontario physicians between 2013 and 2017 from the Narcotics Monitoring System. Using the Corporate Provider Database and ICES Physician Database, which contain medical school of training, we linked patients who filled opioid prescriptions with their respective prescribing physician. Available data on Canadian medical school rankings were obtained from Maclean’s news magazine. We used regression analysis to assess the relationship between number of opioid prescriptions and medical school ranking. Results: Compared to the United States, average annual number of opioid prescriptions per physician was lower in Ontario (236 vs. 78). Unlike the United States, we found little evidence that physicians trained at lower ranked medical schools prescribed more than their top-ranked school counterparts after controlling for specialty and location of practice. However, primary care physicians trained at non-English-speaking foreign schools prescribed the most opioids even after excluding opioid maintenance therapy–related prescriptions. Conclusion: The role of medical school training on opioid prescribing patterns among Ontario physicians differs from that in the United States likely due to greater homogeneity of curricula among Canadian schools. Ensuring physicians trained abroad receive additional pain management/addiction training may help address part of the opioid epidemic in Ontario.

To describe new users of atypical antipsychotics (APs) in terms of sociodemographic characteristics, cardio-metabolic risk profile, prescription patterns, healthcare costs and cardio-metabolic events over the 24 months after treatment initiation. Atypical AP new users were selected from the ReS database and grouped into three: patients already affected by cardio-metabolic diseases (group A), patients without these clinical conditions but with predisposing conditions (group B) and patients without cardio-metabolic diseases and predisposing conditions (group C). Annual prescription patterns and healthcare costs were analysed. Subjects of groups B and C were matched with controls to compare the occurrences of cardio-metabolic events over 24 months. Thirty-two thousand thirty-four new users of atypical APs were selected (median age 69). The 22.3% had cardio-metabolic diseases, 14.8% had predisposing conditions and 62.9% had none of these. The 99.3% received monotherapy. The mean annual cost per patient was €2785, and the median cost was €1108. After 24 months, a cardio-metabolic event occurred in 11.5% of group B vs. 8.7% of the controls (p

Background Patients living with chronic obstructive pulmonary disease (COPD) are at an increased risk of lung cancer. A common comorbidity of COPD is cardiovascular disease; as such, COPD patients often receive statins. This study sought to understand the association between statin exposure and lung cancer risk in a population-based cohort of COPD patients. Methods We identified a population-based cohort of COPD patients based on having filled at least three prescriptions for an anticholinergic or short-acting beta-agonist (SABA). We used an array of methods of defining medication exposure including three conventional methods (ever statin exposure, cumulative duration of use, and cumulative dose) and two novel methods (recency-weighted cumulative duration of use and recency-weighted cumulative dose). To assess residual confounding, a negative control exposure was used to test the validity of our results. All exposure variables were time-dependent. Results The population-based cohort of COPD had 39,879 patients with mean age of 70.6 (SD: 11.2) years and, of which, 53.5% were female. There were 12,469 patients who received at least one statin prescription. Results from the reference case multivariable analysis indicated a reduced risk from statin exposure (HR: 0.85 (95% CI: 0.73–1.00) in COPD patients, but this result not statistically significant. Using the two recency-weighted modelling approaches, statin exposure was associated with a statistically significant reduction in lung cancer risk (recency-weighted cumulative dose, HR: 0.85 (95% CI: 0.77–0.93) and recency-weighted cumulative duration of use, HR: 0.97 (95% CI: 0.96–0.99). Multivariable analysis incorporating the negative control exposure was not statistically significant (HR: 0.89 (95% CI: 0.75–1.10). Conclusions The results of this population-based analysis indicate that statin use in COPD patients may reduce the risk of lung cancer. While the effect was not statistically significantly across all exposure definitions, the overall results support the hypothesis that COPD patients might benefit from statin therapy.

Background Although several studies have examined the association between occupational stress and turnover, these studies relied on cross-sectional designs, subjects’ self-report, healthcare workforce, or small sample sizes. This study aimed to confirm whether occupational stress increases the risk of turnover in a large-scale prospective cohort study using actual turnover data from company records. Methods The participants were 3892 male and 5765 female employees aged 20–49 years in a financial service company. We followed them from October 2012 until April 1, 2016 and used company records to identify employees who resigned. We identified employees with high and low stress using the Brief Job Stress Questionnaire. Hazard ratios for turnover in high-stress employees were estimated using Cox proportional hazards models, and population attributable risks were calculated separately for men and women. Results During 11,475,862 person-days, 122 men and 760 women resigned. After adjustment for age, length of service, job type, and position, the hazard ratios (95% confidence intervals) for turnover in high-stress employees were 2.86 (1.74–4.68) for men and 1.52 (1.29–1.78) for women. The corresponding population attributable risks for high stress were 8.2% for men and 8.3% for women. The component scores, i.e., job stressors, psychological/physical stress response, workplace social support, and job strain (the combination of high job demands and low job control) were also significantly associated with turnover (p Conclusions Occupational stress increases the risk of actual turnover. Measures to prevent occupational stress may be useful to prevent employee turnover.

Background The ability to identify patients with autosomal dominant polycystic kidney disease (ADPKD) and distinguish them from patients with similar conditions in healthcare administrative databases is uncertain. We aimed to measure the sensitivity and specificity of different ADPKD administrative coding algorithms in a clinic population with non-ADPKD and ADPKD kidney cystic disease. Methods We used a dataset of all patients who attended a hereditary kidney disease clinic in Toronto, Ontario, Canada between 1 January 2010 and 23 December 2014. This dataset included patients who met our reference standard definition of ADPKD or other cystic kidney disease. We linked this dataset to healthcare databases in Ontario. We developed eight algorithms to identify ADPKD using the International Classification of Diseases, 10th Revision (ICD-10) codes and provincial diagnostic billing codes. A patient was considered algorithm positive if any one of the codes in the algorithm appeared at least once between 1 April 2002 and 31 March 2015. Results The ICD-10 coding algorithm had a sensitivity of 33.7% [95% confidence interval (CI) 30.0–37.7] and a specificity of 86.2% (95% CI 75.7–92.5) for the identification of ADPKD. The provincial diagnostic billing code had a sensitivity of 91.1% (95% CI 88.5–93.1) and a specificity of 10.8% (95% CI 5.3–20.6). Conclusions ICD-10 coding may be useful to identify patients with a high chance of having ADPKD but fail to identify many patients with ADPKD. Provincial diagnosis billing codes identified most patients with ADPKD and also with other types of cystic kidney disease.

Background Congenital anomalies are a major cause of co‐morbidity in children. Diagnostic code lists are increasingly used to identify congenital anomalies in administrative health records. Evidence is lacking on comparability of these code lists. Objectives To compare prevalence of congenital anomalies and prognostic outcomes for children with congenital anomalies identified in administrative health records using three different code lists. Methods We developed national cohorts of singleton livebirths in England (n = 7 354 363, 2003‐2014) and Scotland (n = 493 556, 2003‐2011). Children with congenital anomalies were identified if congenital anomaly diagnosis was recorded at birth, during subsequent hospital admission or as cause of death before 2 years old. We used three code lists: the EUROCAT list for congenital anomaly surveillance in Europe; the Hardelid list developed to identify children with chronic conditions (including congenital anomalies) admitted to hospital in England; and the Feudtner list developed to indicate children with complex chronic conditions (including congenital anomalies) admitted to hospitals in the United States. We compared prevalence, and risks of postnatal hospital readmission and death according to each code list in England and Scotland. Results Prevalence of congenital anomalies was highest using the EUROCAT list (4.1% of livebirths in England, 3.7% in Scotland), followed by Hardelid (3.1% and 3.0% of livebirths, respectively) and Feudtner (1.8% and 1.5% of livebirths, respectively). 67.2%‐73.3% of children with congenital anomalies in England and 65.2%‐77.0% in Scotland had at least one postnatal hospital admission across the three code lists; mortality ranged between 42.6‐75.4 and 41.5‐88.7 deaths per 1000 births in England Scotland, respectively. The risk of these adverse outcomes was highest using Feudtner and lowest using EUROCAT code lists. Conclusions The prevalence of congenital anomalies varied by congenital anomaly code list, over time and between countries, reflecting in part differences in hospital coding practices and admission thresholds. As a minimum, researchers using administrative health data to study congenital anomalies should report sensitivity analyses using different code lists.

Chemotherapy has improved outcomes in early-stage breast cancer, but treatment practices vary, and use of acute care is common. We conducted a pan-Canadian study to describe treatment differences and the incidence of emergency department visits (edvs), edvs leading to hospitalization (edvhs), and direct hospitalizations (hs) during adjuvant chemotherapy. The cohort consisted of women diagnosed with early-stage breast cancer (stages i&ndash, iii) during 2007&ndash, 2012 in British Columbia, Manitoba, Ontario, or Nova Scotia who underwent curative surgery. Parallel provincial analyses were undertaken using linked clinical, registry, and administrative databases. The incidences of edvs, edvhs, and hs in the 6 months after treatment initiation were examined for patients treated with adjuvant chemotherapy. The cohort consisted of 50,224 patients. The proportion of patients who received chemotherapy varied by province, with Ontario having the highest proportion (46.4%), and Nova Scotia, the lowest proportion (38.0%). Age, stage, receptor status, comorbidities, and geographic location were associated with receipt of chemotherapy in all provinces. Ontario had the highest proportion of patients experiencing an edv (36.1%), but the lowest proportion experiencing h (6.4%). Conversely, British Columbia had the lowest proportion of patients experiencing an edv (16.0%), but the highest proportion experiencing h (26.7%). The proportion of patients having an edvh was similar across provinces (13.9%&ndash, 16.8%). Geographic location was associated with edvs, edvhs, and hs in all provinces. Intra- and inter-provincial differences in the use of chemotherapy and acute care were observed. Understanding variations in care can help to identify gaps and opportunities for improvement and shared learnings.

International audience; Simple SummaryFew studies have investigated the link between SARS-CoV-2 and health restrictions and its effects on the health of lung cancer (LC) patients. This study aimed to assess the impact of SARS-CoV-2 on activity volume, postoperative complications and in-hospital mortality (IHM) for LC resections in 2020 at the national level in France. Our study shows a decrease in the volume of LC resections, especially during the first lockdown. We also show that only 0.43% of patients hospitalized for LC surgery during 2020 developed a SARS-CoV-2 infection, but this low rate is counterbalanced by a high IHM (21%) in these 51 patients. Our findings suggest that, even if the IHM is high, LC surgery is feasible during a pandemic provided that the general guidance protocols edited by the surgical societies are respected. Therefore, this study provides further arguments to encourage teams to test for COVID-19 prior to surgery and patients to be vaccinated.AbstractFew studies have investigated the link between SARS-CoV-2 and health restrictions and its effects on the health of lung cancer (LC) patients. The aim of this study was to assess the impact of the SARS-CoV-2 epidemic on surgical activity volume, postoperative complications and in-hospital mortality (IHM) for LC resections in France. All data for adult patients who underwent pulmonary resection for LC in France in 2020, collected from the national administrative database, were compared to 2018–2019. The effect of SARS-CoV-2 on the risk of IHM and severe complications within 30 days among LC surgery patients was examined using a logistic regression analysis adjusted for age, sex, comorbidities and type of resection. There was a slight decrease in the volume of LC resections in 2020 (n = 11,634), as compared to 2018 (n = 12,153) and 2019 (n = 12,227), with a noticeable decrease in April 2020 (the peak of the first wave of epidemic in France). We found that SARS-CoV-2 (0.43% of 2020 resections) was associated with IHM and severe complications, with, respectively, a sevenfold (aOR = 7.17 (3.30–15.55)) and almost a fivefold (aOR = 4.76 (2.31–9.80)) increase in risk. Our study suggests that LC surgery is feasible even during a pandemic, provided that general guidance protocols edited by the surgical societies are respected

Background Switzerland, with its decentralized health system, has seen the emergence of a variety of care models to meet the complex needs of asylum seekers. A network of public and private providers was designed in the canton Vaud, in which a nurse-led team acts as a first contact point to the health system and provides health checks, preventive care, and health education to this population. In addition, the service plays a case management role for more complex and vulnerable patients. While the network has been examined from a clinical angle, we provide the first descriptive evidence on the care and cost trajectories of asylum seekers in the canton. Methods We used routinely collected administrative, patient-level data in a Swiss region responsible for 10% of the asylum seekers in the country. We extracted data on all asylum seekers aged 18 or older who entered the network between 2012 and 2015. The data covered all healthcare costs during the period until they left the network, either because they were granted residence, they left the country, or until 31 December 2018. We estimated random effects regression models for costs and consultations within and outside the network for each month of stay in the network. We investigated language barriers in access to care by stratifying the analysis between patients who spoke one of the official Swiss languages or English and patients who did not speak any of these languages. Principal findings We found that both overall health care costs and contacts with the nurse-led team were relatively high during the first year of stay. Asylum seekers then progressively integrated into the regular health system. Individuals who did not speak the language generally had more contacts with the network and fewer contacts outside. Conclusions In this exploratory study, we observe a transition from nurse-led specific care with frequent contacts to care in the regular health system. This leads us to generate the hypothesis that a nurse-led, patient-centered care network for asylum seekers can play an important role in providing primary care during the first year after their arrival and can subsequently help them navigate autonomously within the conventional healthcare system.

Background Routinely recorded data held in electronic health records can be used to inform the conduct of randomised controlled trials (RCTs). However, limitations with access and accuracy have been identified. Objective: Using epilepsy as an exemplar condition, we assessed the attributes and agreement of routinely recorded data compared to data collected using case report forms in a UK RCT assessing antiepileptic drug treatments for individuals newly diagnosed with epilepsy. Methods The case study RCT is the Standard and New Antiepileptic Drugs II (SANAD II) trial, a pragmatic, UK multicentre RCT assessing the clinical and cost-effectiveness of antiepileptic drugs as treatments for epilepsy. Ninety-eight of 470 eligible participants provided consent for access to routinely recorded secondary care data that were retrieved from NHS Digital Hospital Episode Statistics (N=71) and primary and secondary care data from The Secure Anonymised Information Linkage Databank (N=27). We assessed data items relevant to the identification of individuals eligible for inclusion in SANAD II, baseline and follow-up visits. The attributes of routinely recorded data were assessed including the degree of missing data. The agreement between routinely recorded data and data collected on case report forms in SANAD II was assessed using calculation of Cohen’s kappa for categorical data and construction of Bland-Altman plots for continuous data. Results There was a significant degree of missing data in the routine record for 15 of the 20 variables assessed, including all clinical variables. Agreement was poor for the majority of comparisons, including the assessments of seizure occurrence and adverse events. For example, only 23/62 (37%) participants had a date of first-ever seizure identified in routine datasets. Agreement was satisfactory for the date of prescription of antiepileptic drugs and episodes of healthcare resource use. Conclusions There are currently significant limitations preventing the use of routinely recorded data for participant identification and assessment of clinical outcomes in epilepsy, and potentially other chronic conditions. Further research is urgently required to assess the attributes, agreement, additional benefits, cost-effectiveness and ‘optimal mix’ of routinely recorded data compared to data collected using standard methods such as case report forms at clinic visits for people with epilepsy. Trial registration Standard and New Antiepileptic Drugs II (SANAD II (EudraCT No: 2012-001884-64, registered 05/09/2012; ISRCTN Number: ISRCTN30294119, registered 03/07/2012))

This article investigates the distribution of widely used consumer loans in Denmark in light of the ‘risk position’ that this places Danish households in. Denmark has the highest debt to income ratio among all OECD countries (OECD 2019). The high level of consumer debt has received limited political attention in Denmark and the social and legal protection of citizens with debt problems is weak (Jørgensen 2012, 2015). This article presents findings from an empirical study investigating the distribution of common consumer loans in Denmark. Drawing on the notion of ‘risk position’ the article challenges the idea that only socially marginal groups are in risk of getting into debt problems. In the empirical study we analyze the sociodemographic distribution of two common loan types in Denmark, bank loans and credit card debt among loan takers by using administrative register data of a full population of individuals. Register-based data provides the most reliable measures of debt compared to self-reported surveys, because of non-response problems in surveys (cv. Oksanen et al. 2015). The results show high debt levels among hitherto known vulnerable social groups but also highlights groups of middle- and higher-income wage earners as having very high levels of debt. We conclude by framing the results in light of existing policy measures in Denmark and suggest a better balance between deregulation of credit markets and individualization of debt problems on the one hand and the need for political protection of individual loan takers on the other. This article investigates the distribution of widely used consumer loans in Denmark in light of the ‘risk position’ that this places Danish households in. Denmark has the highest debt to income ratio among all OECD countries (OECD 2019). The high level of consumer debt has received limited political attention in Denmark and the social and legal protection of citizens with debt problems is weak (Jørgensen 2012, 2015). This article presents findings from an empirical study investigating the distribution of common consumer loans in Denmark. Drawing on the notion of ‘risk position’ the article challenges the idea that only socially marginal groups are in risk of getting into debt problems. In the empirical study we analyze the sociodemographic distribution of two common loan types in Denmark, bank loans and credit card debt among loan takers by using administrative register data of a full population of individuals. Register-based data provides the most reliable measures of debt compared to self-reported surveys, because of non-response problems in surveys (cv. Oksanen et al. 2015). The results show high debt levels among hitherto known vulnerable social groups but also highlights groups of middle- and higher-income wage earners as having very high levels of debt. We conclude by framing the results in light of existing policy measures in Denmark and suggest a better balance between deregulation of credit markets and individualization of debt problems on the one hand and the need for political protection of individual loan takers on the other.

Objectives This study investigates cost and quality implications of moving regular monitoring of patients with moderate severity type 2 diabetes (T2D) away from specialized hospital clinics into general practice (GP). Methods A 2016 cross-section of patients with moderate disease severity T2D were algorithmically identified using Danish administrative databases. 152,632 GP- and 21,359 hospital-monitored patients with T2D were identified. Total annual healthcare cost is decomposed into GP, medication, nonhospital-specialist, hospital outpatient and inpatient costs. Hospitalizations are used to proxy for quality of care. Cost and quality impacts of treatment setting are assessed using an instrumental variable (IV) analysis. A wide range of patient confounders are used to reduce selection bias, with the difference in patients’ travel-time between nearest specialist outpatient clinic and GP used as an instrument to control for remaining endogeneity of treatment setting. Two-part models are used for zero-inflated outcomes. Results Average total annual healthcare cost were 14,056 DKK greater amongst hospital-monitored patients. IV analysis accounting for endogeneity of treatment setting indicates hospital-based monitoring is causally linked to higher total annual healthcare costs. The estimated local average treatment effect of hospital-based monitoring on total annual healthcare costs was higher (117.2%, 95% CI: 23.3%, 211.1%) than GP-based monitoring. No difference of treatment settings’ quality based on evidence of hospitalizations was found. Conclusion For patients with moderate disease severity T2D, IV analysis accounting for treatment setting endogeneity bias identifies an expected efficiency improvement (average cost reduction without reduction of quality) of moving regular disease management from hospital-based setting to the GP setting.

One of the foundational elements of enhanced recovery after surgery (ERAS) guidelines is early postoperative mobilization. For patients undergoing head and neck cancer (HNC) surgery with free flap reconstruction, the ERAS guideline recommends patients be mobilized within 24 h postoperatively. The objective of this study was to evaluate compliance with the ERAS recommendation for early postoperative mobilization in 445 consecutive patients who underwent HNC surgery in the Calgary Head and Neck Enhanced Recovery Program. This retrospective analysis found that recommendation compliance increased by 10% despite a more aggressive target for mobilization (from 48 to 24 h). This resulted in a decrease in postoperative mobilization time and a stark increase in the proportion of patients mobilized within 24 h (from 10% to 64%). There was a significant relationship between compliance with recommended care and time to postoperative mobilization (Spearman’s rho = −0.80, p &lt, 0.001). Hospital length of stay was reduced by a median of 2 days, from 12 (1QR = 9–16) to 10 (1QR = 8–14) days (z = 3.82, 0.001) in patients who received guideline-concordant care. Engaging the clinical team and changing the order set to support clinical decision-making resulted in increased adherence to guideline-recommended care for patients undergoing major HNC surgery with free flap reconstruction.

Background Previous research has shown that chronic disease case definitions constructed using population-based administrative health data may have low accuracy for ascertaining cases of episodic diseases such as rheumatoid arthritis, which are characterized by periods of good health followed by periods of illness. No studies have considered a dynamic approach that uses statistical (i.e., probability) models for repeated measures data to classify individuals into disease, non-disease, and indeterminate categories as an alternative to deterministic (i.e., non-probability) methods that use summary data for case ascertainment. The research objectives were to validate a model-based dynamic classification approach for ascertaining cases of juvenile arthritis (JA) from administrative data, and compare its performance with a deterministic approach for case ascertainment. Methods The study cohort was comprised of JA cases and non-JA controls 16 years or younger identified from a pediatric clinical registry in the Canadian province of Manitoba and born between 1980 and 2002. Registry data were linked to hospital records and physician billing claims up to 2018. Longitudinal discriminant analysis (LoDA) models and dynamic classification were applied to annual healthcare utilization measures. The deterministic case definition was based on JA diagnoses in healthcare use data anytime between birth and age 16 years; it required one hospitalization ever or two physician visits. Case definitions based on model-based dynamic classification and deterministic approaches were assessed on sensitivity, specificity, and positive and negative predictive values (PPV, NPV). Mean time to classification was also measured for the former. Results The cohort included 797 individuals; 386 (48.4 %) were JA cases. A model-based dynamic classification approach using an annual measure of any JA-related healthcare contact had sensitivity = 0.70 and PPV = 0.82. Mean classification time was 9.21 years. The deterministic case definition had sensitivity = 0.91 and PPV = 0.92. Conclusions A model-based dynamic classification approach had lower accuracy for ascertaining JA cases than a deterministic approach. However, the dynamic approach required a shorter duration of time to produce a case definition with acceptable PPV. The choice of methods to construct case definitions and their performance may depend on the characteristics of the chronic disease under investigation.

Background Administrative data have limited sensitivity for case finding of atrial fibrillation/atrial flutter (AF/AFL). Linkage with clinical repositories of interpreted ECGs may enhance diagnostic yield of AF/AFL. Methods and Results We retrieved 369 ECGs from the institutional Marquette Universal System for Electrocardiography (MUSE) repository as validation samples, with rhythm coded as AF (n=49), AFL (n=50), or other competing rhythm diagnoses (n=270). With blinded, duplicate review of ECGs as the reference comparison, we compared multiple MUSE coding definitions for identifying AF/AFL. We tested the agreement between MUSE diagnosis and reference comparison, and calculated the sensitivity and specificity. Using a data set linking clinical registries, administrative data, and the MUSE repository (n=11 662), we assessed the incremental diagnostic yield of AF/AFL by incorporating ECG data to administrative data‐based algorithms. The agreement between MUSE diagnosis and reference comparison depended on the coding definitions applied, with the Cohen κ ranging from 0.57 to 0.75. Sensitivity ranged from 60.6% to 79.1%, and specificity ranged from 93.2% to 98.0%. A coding definition with AF/AFL appearing in the first 3 ECG statements had the highest sensitivity (79.1%), with little loss of specificity (94.5%). Compared with the algorithms with only administrative data, incorporating ECG data increased the diagnostic yield of preexisting AF/AFL by 14.5% and incident AF/AFL by 7.5% to 16.1%. Conclusions Routine ECG interpretation using MUSE coding is highly specific and moderately sensitive for AF/AFL detection. Inclusion of MUSE ECG data in AF/AFL case identification algorithms can identify cases missed using administrative data‐based algorithms alone.

Exposure to agents acting on the renin-angiotensin system was not associated with a risk increase of COVID-19 infection in 2 Italian matched case-control studies, 1 nested in hypertensive patients and the other in patients with cardiovascular diseases or diabetes.

Population-based registers are widely used in epidemiological studies. We aimed to estimate the validity of multiple sclerosis (MS) diagnoses registered in the Swedish National Patient Register (NPR) by two sequential register-based case-definition algorithms. Prevalent MS patients aged 16–64 years were identified from the in- and specialised out-patient NPR in 2001–2013, using International Classification of Diseases code G35. These identified MS diagnoses were validated through two sequential register-based case-definition algorithms, as the ‘gold-standard’ reference, by linking individual-level data longitudinally to other nationwide registers. The primary algorithm first sought to corroborate the MS diagnoses with MS-specific information in other nationwide registers. The exploratory secondary algorithm identified individuals with MS-related information in other registers and those who were unable to be followed sufficiently. Through multi-register linkage, we estimated the number of confirmed and uncertain individuals with an MS diagnosis recorded in the NPR. A total of 19,781 individuals (mean age at first visit 45.2 years; 69.5% women) had at least one MS diagnosis recorded in the NPR during 2001–2013. Using the two case-definition algorithms, 92.5% (n = 18,291) of the MS diagnoses recorded in the NPR were confirmed, while 7.5% (n = 1490) remained uncertain. Our findings indicate that a very high percentage of patients coded with an MS diagnosis in the Swedish NPR actually have MS, and supports the use of the NPR as a viable source to identify individuals with an MS diagnosis for population-based research. This exploratory methods paper suggests an alternative novel method to verify individuals’ diagnoses in register-based settings. Electronic supplementary material The online version of this article (10.1007/s10654-019-00558-7) contains supplementary material, which is available to authorized users.

Background Faced with growing budget pressure, policymakers worldwide recognize the necessity of strategic disinvestment from ineffective, inefficient or harmful medical practices. However, disinvestment programs face substantial social, political and cultural challenges: mistrust, struggles for clinical autonomy or stakeholders’ reluctance to engage in what can be perceived as ‘rationing’. Academic literature says little about effective strategies to address these challenges. This paper provides insights on this matter. We analyzed the epistemic work of a group of policymakers at the National Health Care Institute on what was initially a disinvestment initiative within the context of the Dutch basic benefits package: the ‘Appropriate Care’ program. The Institute developed a strategy using national administrative data to identify and tackle low-value care covered from public funds as well as potential underuse, and achieve savings through improved organization of efficiency and quality in health care delivery. How did the Institute deal with the socio-political sensitivities associated with disinvestment by means of their epistemic work? Method We conducted ethnographic research into the National Health Care Institute’s epistemic practices. Research entailed document analysis, non-participant observation, in-depth conversations, and interviews with key-informants. Results The Institute dealt with the socio-political sensitivities associated with disinvestment by democratizing the epistemic practices to identify low-value care, by warranting data analysis by clinical experts, by creating an epistemic safe space for health care professionals who were the object of research into low-value care, and by de-emphasizing the economization measure. Ultimately, this epistemic work facilitated a collaborative construction of problems relating to low-value care practices and their solutions. Conclusions This case shows that – apart from the right data and adequate expertise – disinvestment requires clinical leadership and political will on the part of stakeholders. Our analysis of the Institute’s Appropriate Care program shows how the epistemic effort to identify low-value care became a co-construction between policymakers, care providers, patients and insurers of problems of ‘waste’ in Dutch social health insurance. This collective epistemic work gave cognitive, moral and political standing to the idea of ‘waste’ in public health expenditure. Electronic supplementary material The online version of this article (10.1186/s12913-019-4434-1) contains supplementary material, which is available to authorized users.

ObjectivesTo examine and compare whether dispensing of prescription opioids, non-steroidal anti-inflammatory drugs (NSAIDs) and skeletal muscle relaxants (SMRs) within 8 weeks after a work-related low back pain (LBP) injury is associated with work disability.MethodsA historical cohort study of 55 571 workers’ compensation claimants with LBP claims in British Columbia from 1998 to 2009 was conducted using linked compensation, dispensing and healthcare data. Four exposures were constructed to estimate the effect on receipt of benefits and days on benefits 1 year after injury: drug class(es) dispensed, days' supply, strength of opioids dispensed and average daily morphine-equivalent dose.ResultsCompared with claimants receiving NSAIDs and/or SMRs, the incidence rate ratio (IRR) of days on benefits was 1.09 (95% CI 1.04 to 1.14) for claimants dispensed opioids only and 1.26 (95% CI 1.22 to 1.30) for claimants dispensed opioids with NSAIDs and/or SMRs. Compared with weak opioids only, the IRR for claimants dispensed strong opioids only or strong and weak opioids combined was 1.21 (95% CI 1.12 to 1.30) and 1.29 (95% CI 1.20 to 1.39), respectively. The incident rate of days on benefits associated with each 7-day increase in days supplied of opioids, NSAIDs and SMRs was 10%, 4% and 3%, respectively. Similar results were seen for receipt of benefits, though effect sizes were larger.ConclusionsFindings suggest provision of early opioids leads to prolonged work disability compared with NSAIDs and SMRs, though longer supplies of all drug classes are also associated with work disability. Residual confounding likely partially explains the findings. Research is needed that accounts for prescriber, system and workplace factors.

Les troubles liés aux substances psychoactives (TLS) sont associés à de nombreux problèmes sociosanitaires requérant divers services adaptés. Dans le but de déterminer la prévalence des TLS et leurs impacts sur l’utilisation des services dans le système de santé québécois, le Système intégré de surveillance des maladies chroniques du Québec développe actuellement des indicateurs permettant d’identifier les individus traités dans la province pour un TLS. Ces indicateurs serviront à étudier les caractéristiques des individus ayant un TLS, à évaluer l’excès de mortalité et les complications qui en résultent, à explorer l’impact des politiques ministérielles et à adapter l’offre de services en fonction de l’évolution temporelle des TLS. Or, la création de ces indicateurs se heurte à plusieurs défis. La Classification internationale des maladies est en décalage avec les connaissances et les réalités actuelles, ce qui ne permet pas de bien identifier les substances consommées par les individus en se basant sur les codes diagnostiques. Aussi, les TLS ne sont pas toujours explicitement nommés, mais implicitement évoqués par le biais d’autres diagnostics, notamment dans le cas de maladies physiques ou d’intoxications. De plus, la présence du bon code diagnostique dépend d’aspects administratifs. Cet article méthodologique présente les étapes et les réflexions qui ont mené au développement des indicateurs permettant d’identifier les individus ayant un TLS à partir de banques de données administratives., Introduction Epidemiogical surveys in the general population can provide relevant information on substance use and substance-related disorders (SRD). However, because of time and resource constraints, this data is limited in its scope. Health administrative databanks consist of routinely collected data covering a large sample size, often representative of the general population. They allow for further longitudinal analyses of comorbidities patterns and health services utilization over decades in individuals with SRD. Developing algorithms to identify these individuals is crucial before being able to tap into these databanks.Objective To present and to reflect on the methodological process leading to the creation of SRD case definitions in administrative health databanks.Methods The Quebec Integrated Chronic Disease Surveillance System (QICDSS) contains five linked administrative health databanks that are updated annually and covers over 98% of the general population. Codes from the 9th and 10th revisions of the International Classification of Diseases (ICD-9 and ICD-10) were used to define individuals who have a SRD, according to diagnoses made by a physician. First, all ICD codes that could potentially define a SRD were identified through a literature review. Second, relevant codes were selected. Third, case definition algorithms were created by grouping codes that describe a similar concept. These three steps were performed by comparing our codes with previous propositions from other teams, and through group discussions with a committee of experts (one psychiatrist, two general practitioners, one emergency doctor, and two researchers).Results Relevant ICD codes were found in specific chapters on SRD, but also in different sections concerning physical diseases that are induced by substance use or concerning poisoning and intoxication. In total, 89 ICD-9 codes and 197 ICD-10 codes were identified. From this list, codes that were almost never used in the QICDSS, codes that were almost never reported by other research teams, codes that were not specific to substance use, and codes related to tobacco use were all excluded. Codes were first categorized if they were related to alcohol or to another substance. No distinction could be made according to a specific substance, mainly because of imprecision surrounding ICD-9 coding. From this retained list, six case definitions were created: 1) alcohol use disorders (i.e. abuse or dependence); 2) drug use disorders; 3) alcohol induced disorders (i.e. withdrawal, induced psychotic disorders and other mental disorders, physical diseases 100% attributable to alcohol); 4) drug induced disorders; 5) alcohol intoxication; 6) drug intoxication.Discussion and conclusion Although unanimous consensus by the expert committee had to be obtained during code selection and grouping to create these case definitions for SRD, further validation needs to be conducted to determine if these algorithms identify appropriately individuals with SRD. Once tested in other databanks using the ICD system, these case definitions can be used to perform analyses concerning prevalence and incidence, comorbidities patterns and health services utilization to obtain a more complete picture of SRD.

The ESSnet on Quality of Multisource Statistics is part of the ESS.VIP Admin Project. The main objectives of that latter project are (i) to improve the use of administrative data sources and (ii) to support the quality assurance of the output produced using administrative sources. The ultimate aim of the ESSnet is to produce quality guidelines for National Statistics Institutes (NSIs) that are specific enough to be used in statistical production at those NSIs. The guidelines aim to cover the diversity of situations in which NSIs work as well as restrictions on data availability. The guidelines will list a variety of potential measures, indicate for each of them their applicability and in what situation it is preferred or not, and provide an ample set of examples of specific cases and decision-making processes. Work Package 3 (WP 3) of the ESSnet focuses on developing and testing quantitative measures for measuring the quality of output based on multiple data sources and on methods to compute such measures. In particular, WP 3 focuses on non-sampling errors. Well-known examples of such quality measures are bias and variance of the estimated output. Methods for computing these and other quality measures often depend on the specific data sources. Therefore, we have identified several basic data configurations for the use of administrative data sources in combination with other sources, for which we propose, revise and test quantitative measures for the accuracy and coherence of the output. In this article we discuss the identified basic data configurations, the approach taken in WP 3, and give some examples of quality measures and methods to compute those measures. We also point out some topics for future work.

Administrative data sources are increasingly used by National Statistical Institutes to compile statistics. These sources may be based on decentralised autonomous administrations, for instance municipalities that deliver data on their inhabitants. One issue that may arise when using these decentralised administrative data is that categorical variables are underreported by some of the data suppliers, for instance to avoid administrative burden. Under certain conditions overreporting may also occur. When statistical output on changes is estimated from decentralised administrative data, the question may arise whether those changes are affected by shifts in reporting frequencies. For instance, in a case study on hospital data, the values from certain data suppliers may have been affected by changes in reporting frequencies. We present an automatic procedure to detect suspicious data suppliers in decentralised administrative data in which shifts in reporting behaviour are likely to have affected the estimated output. The procedure is based on a predictive mean matching approach, where part of the original data values are replaced by imputed values obtained from a selected reference group. The method is successfully applied to a case study with administrative hospital data.

Background Studies have found an association between obesity and an increased risk for peripartum depression, which has also been linked to decreased placental lactogen levels. In addition, women with obesity treated for gestational diabetes with insulin were found to have increased levels of placental lactogen. Treatment options exist for perinatal and postpartum depression however they pose a risk to the developing offspring. Thus, prevention as well as markers for early identification of peripartum depression are needed. Therefore, our study objective is to identify the association between insulin treatment in pregnancy and the risk of postpartum psychological distress (abbreviated here as PPD) among cohorts of women with and without obesity. Methods Administrative health data (2002/03–2018/19) were used to identify a cohort of women (age 15+ years) who gave birth (N = 250,746) and had no pre-existing mood/anxiety disorders or diabetes (N = 222,863 excluded). Women were then divided into two groups: lean (N = 17,975) and with obesity (N = 9908), which was identified by a recorded maternal weight of > 38 to Results The unadjusted risk of PPD was higher in the obesity group (8.56%; 95% CI 8.00–9.15) than in the lean group (6.93%; 95% CI 6.56–7.33). When no insulin treatment was given during pregnancy, mothers with obesity had a significantly higher risk of PPD than the lean group (aRR 1.27; 95% CI 1.17–1.39; p p = 0.248). Conclusion This is the first study to demonstrate a positive association between insulin treatment in pregnancy among women with obesity and reduced PPD rates, suggesting insulin as a possible preventative measure. However, the biological mechanism behind the observed positive effect of insulin on PPD rates remains to be investigated.

Introduction When designing longitudinal cohort studies, investigators must make decisions about study duration (i.e. length of follow-up) and frequency of outcome measurement. This research explores these design decisions for longitudinal cohort studies constructed using routinely-collected administrative data. Objectives To illustrate the effects of varying study duration and frequency of outcome measurement in longitudinal cohort studies conducted using routinely-collected administrative data using a numeric example. Methods Linked administrative data from Manitoba, Canada were used. The cohort included mothers who experienced the death of an infant between April 1, 1999 and March 31, 2012 and a matched (three:one) group of mothers who did not experience an infant death. A generalized linear model was used to test for differences between groups in the non-linear (i.e. quadratic) and linear trend over time for the number of healthcare contacts. Holding sample size constant, models were fit to the data for various combinations of study duration and measurement frequency. Regression coefficient estimates and their standard errors were compared. Results A total of 2576 mothers were included; 644 experienced an infant death and 1932 were matches. Thirteen combinations of measurement frequency (one, two, three, four periods/year) and study duration (one, two, three, four years) were investigated. As frequency increased from one to four periods/year, the standard errors of the regression coefficients for the group difference in the non-linear trend (i.e. group-time-time interaction) decreased up to 98.9%. As duration increased from one to fours years, the standard errors decreased up to 96.9%. As frequency and duration increased, the estimated regression coefficients trended toward zero. Similar results were observed for the linear trend model. Conclusion Longitudinal cohort studies based on administrative data offer flexibility in time-related design elements, but present potential challenges. Recommendations about how to select and report design decisions in studies should be included in reporting guidelines.

There is a perception that patients with autosomal dominant polycystic kidney disease (ADPKD) are more likely to develop kidney stones than the general population.To compare the rate of hospital encounter with kidney stones and the rate of stone interventions between patients with and without ADPKD.Retrospective cohort study.Ontario, Canada.Patients with and without ADPKD who had a prior hospital encounter between 2002 and 2016.Rate of hospital encounter with kidney stones and rate of stone intervention.We used inverse probability exposure weighting based on propensity scores to balance baseline indicators of health between patients with and without ADPKD. We followed each patient until death, emigration, outcomes, or March 31, 2017. We used a Cox proportional hazards model to compare event rates between the two groups.Patients with ADPKD were at higher risk of hospital encounter with stones compared with patients without ADPKD (81 patients of 2094 with ADPKD [3.8%] vs 60 patients of 1902 without ADPKD [3.2%]; 8.9 vs 5.1 events per 1000 person-years; hazard ratio 1.6 [95% CI, 1.3-2.1]). ADPKD was not associated with a higher risk of stone intervention (49 of 2094 [2.3%] vs 47 of 1902 [2.4%]; 5.3 vs 3.9 events per 1000 person-years; hazard ratio 1.2 [95% CI = 0.9-1.3]).We did not have information on kidney stone events outside of the hospital. There is a possibility of residual confounding.ADPKD was a significant risk factor for hospital encounters with kidney stones.Il existe une perception selon laquelle les patients atteints de polykystose rénale autosomique dominante (ADPKD) seraient plus susceptibles de développer des calculs rénaux que la population générale.Comparer les taux d’hospitalisations et d’interventions pour calculs rénaux entre des patients atteints ou non d’ADPKD.Étude de cohorte rétrospective.Ontario, Canada.Des patients atteints ou non d’ADPKD qui avaient déjà été hospitalisés entre 2002 et 2016.Les taux d’hospitalisations et d’interventions pour calculs rénaux.Nous avons utilisé une pondération d’exposition à probabilité inverse fondée sur les scores de propension afin d’équilibrer les indicateurs de santé de base entre les patients atteints ou non d’ADPKD. Nous avons suivi chaque patient jusqu’à son décès, jusqu’à son émigration, jusqu’au résultat ou jusqu’au 31 mars 2017. Nous avons utilisé un modèle de risques proportionnels de Cox pour comparer les taux d’événements entre les deux groupes.Les patients atteints d’ADPKD présentaient un risque plus élevé d’être hospitalisés pour calculs rénaux que les patients non atteints d’ADPKD (81 patients sur 2094 atteints d’ADPKD [3,8 %] contre 60 patients sur 1902 sans ADPKD [3,2 %]; 8,9 contre 5,1 événements pour 1 000 années-personnes; risque relatif: 1,6 [IC 95 %: 1,3 à 2,1]). L’ADPKD n’a pas été associée à un risque plus élevé d’interventions pour retirer des calculs rénaux (49 patients sur 2094 atteints d’ADPKD [2,3 %] contre 47 patients sur 1902 sans ADPKD [2,4 %]; 5,3 contre 3,9 événements pour 1 000 années-personnes; risque relatif: 1,2 [IC 95 %: 0,9 à 1,3]).Nous n’avions pas d’information sur les événements liés aux calculs rénaux à l’extérieur de l’hôpital. Il existe une possibilité de facteurs de confusion résiduels.L’ADPKD s’est avéré un facteur de risque important d’être hospitalisé pour des calculs rénaux.

Objectives Individuals with intellectual disabilities (ID) depend on public services for daily support and medical care; however, this group of individuals can be difficult to identify within population data. This therefore limits the opportunities to accurately estimate the size of the population with ID, monitor trends and tailor public health interventions according to the needs and characteristics of this group. By linking relevant databases, this study sought to identify individuals with ID in national data, to estimate the prevalence of ID based on public service use and to explore how this method can be used to better monitor the population with ID. Study design Explorative data linkage study using the Dutch population register and databases from public services accessible with an ID diagnosis. Methods The overall prevalence of ID in the Dutch adult population was estimated, specified by age group and sex, and the identified ID groups were also characterised by their support needs. Participants included the entire adult Dutch population who were alive on 1 January 2015. Results After linking databases, 187,149 adults with ID were identified within a population of almost 12.7 million Dutch adults, giving an ID prevalence estimate of 1.45%. Prevalence of ID was higher among males (1.7%) than females (1.2%). Most individuals with ID were identified through the use of residential care services (n = 91,064; 0.7%). Non-residential ID-related care was used by 27,007 individuals (0.2%). Social, employment or income support due to a (mild) ID was received by 69,078 individuals (0.5%); the mean age in these ID groups was between 8 and 10 years which is younger than that in the general Dutch population. ID prevalence declined with increasing age across all ID subgroups. Conclusions The ID prevalence in The Netherlands, as determined by ID-related public service usage, aligns with international estimates. This suggests that national supportive services are accessible and used by individuals with ID. Moreover, this demonstrated that databases from national supportive services can be a useful resource to identify individuals with ID at the population level and can enable structural monitoring of the ID population through linking national databases.

Introduction. The Centers for Medicare & Medicaid Services requires a written order of shared decision making (SDM) visit in its coverage policy for low-dose computed tomography (LDCT) for lung cancer screening (LCS). With screening eligibility starting at age 55, private insurance plans will likely adopt this coverage policy. This study examined the implementation of SDM in the context of LCS among the privately insured. Methods. We constructed two study cohorts from MarketScan Commercial Claims and Encounters database 2016-2017: a LDCT cohort who received LDCT for LCS and an SDM cohort who had an LCS-related SDM visit. For the LDCT cohort, we examined the trend and factors associated with the receipt of SDM within 3 months prior to LDCT. For the SDM cohort, we studied the trend and factors associated with LDCT within 3 months after an SDM visit. Results. For privately insured adults aged

Aims To use linked routinely-collected health data to estimate diabetes prevalence and incidence in an Australian cohort of adults aged ≥45 years, and examine risk factors associated with incident disease. Research design and methods The EXamining ouTcomEs in chroNic Disease in the 45 and Up Study (EXTEND45) Study is a linked data study that combines baseline questionnaire responses from the population-based 45 and Up Study (2006–2009, n = 267,153) with multiple routinely-collected health databases up to December 2014. Among participants with ≥1 linked result for any laboratory test, diabetes status was determined from multiple data sources according to standard biochemical criteria, use of glucose-lowering medication or self-report, and the prevalence and incidence rate calculated. Independent risk factors of incident diabetes were examined using multivariable Cox regression. Results Among 152,169 45 and Up Study participants with ≥1 linked laboratory result in the EXTEND45 database (mean age 63.0 years; 54.9% female), diabetes prevalence was 10.8% (95% confidence interval [CI] 10.6%–10.9%). Incident disease in those without diabetes at baseline (n = 135,810; mean age 62.5 years; 56.1% female) was 10.0 per 1,000 person-years (95% CI 9.8–10.2). In all age groups, diabetes incidence was lower in women compared to men, an association that persisted in the fully adjusted analyses. Other independent risk factors of diabetes were older age, being born outside of Australia (with the highest rate of 19.2 per 1,000 person-years observed in people born in South and Central Asia), lower education status, lower annual household income, residence in a major city, family history of diabetes, personal history of cardiovascular disease or hypertension, higher body mass index, smoking and long sleeping hours. Conclusions Our study represents an efficient approach to assessing diabetes frequency and its risk factors in the community. The infrastructure provided by the EXTEND45 Study will be useful for diabetes surveillance and examining other important clinical and epidemiological questions.

Background Randomized controlled trials (RCTs) are uncommon in precision oncology. We provide an introduction and illustrative example of matching methods for evaluating precision oncology in the absence of RCTs. We focus on British Columbia's Personalized OncoGenomics (POG) program, which applies whole‐genome and transcriptome analysis (WGTA) to inform advanced cancer care. Methods Our cohort comprises 230 POG patients enrolled between 2014 and 2015 and matched POG‐naive controls. We generated our matched cohort using 1:1 propensity score matching (PSM) and genetic matching prior to exploring survival differences. Results We find that genetic matching outperformed PSM when balancing covariates. In all cohorts, overall survival did not significantly differ across POG and POG‐naive patients (p > 0.05). Stratification by WGTA‐informed treatment indicated unmatched survival differences. Patients whose WGTA information led to treatment change were at a reduced hazard of death compared to POG‐naive controls in all cohorts, with estimated hazard ratios ranging from 0.33 (95% CI: 0.13, 0.81) to 0.41 (95% CI: 0.17, 0.98). Conclusion These results signal that clinical effectiveness of precision oncology approaches will depend on rates of genomics‐informed treatment change. Our study will guide future evaluations of precision oncology and support reliable effect estimation when RCT data are unavailable.

Ureteroscopy is a minimally invasive treatment option for upper tract stones. The distorted kidney anatomy in patients with autosomal dominant polycystic kidney disease (ADPKD) may place them at higher risk for ureteroscopic complications.To compare the 30-day risk of ureteroscopic complications between patients with and without ADPKD.Retrospective cohort study.Ontario, Canada.Seventy three patients with ADPKD and 81 445 patients without ADPKD who underwent ureteroscopy for upper urinary tract stones between April 1, 2002, and March 1, 2018.A 30-day risk of (1) hospital presentation with ureteroscopic complications (which was a composite outcome of either emergency department visit or hospital admission with acute kidney injury, urinary tract infection, or sepsis); (2) all-cause hospital presentation; (3) all-cause hospital admission; and (4) all-cause emergency department visit.We regressed outcomes on demographic variables, health care use in the prior 1-year, various procedures and comorbidities related to the outcome in the prior 5 years, and prescribed medications filled in the past 120 days using modified Poisson regression to compare the risk ratio (RR) of each outcome between patients with and without ADPKD.The median (interquartile, IQR) age was 44 (38-60 years) in the ADPKD group and 53 (42-64) in the control group. About 40% were women in both groups. The risk of ureteroscopic complications was not significantly different in patients with versus without ADPKD (8.2% vs 4.3%; adjusted RR = 1.5, 95% confidence interval [CI] = 0.7-3.2). Patients with versus without ADPKD were more likely to present to hospital after their procedure (35.6% vs. 20.0%; adjusted RR = 1.6, 95% CI = 1.2-2.2), which included a statistically significant increase in the risk of presenting to the emergency department (32.9% vs. 19.0%; adjusted RR = 1.6, 95% CI = 1.1-2.2) but not hospital admissions (10.9% vs. 5.0%; adjusted RR = 1.8, 95% CI = 0.9-3.4).The low numbers of events led to imprecision around the estimates.Patients with ADPKD have a higher risk of return to the hospital within 30 days of ureteroscopy for stone disease.We did not register this study.L’urétéroscopie est une option minimalement invasive pour traiter les calculs des voies urinaires hautes. Cependant, les distorsions anatomiques des reins présentes chez les patients atteints de polykystose rénale autosomique dominante (ADPKD) exposent ces derniers à un risque accru de complications liées à la procédure.Comparer le risque de complications liées à l’urétéroscopie chez des patients atteints ou non d’ADPKD dans les 30 jours suivant la procédure.Étude de cohorte rétrospective.Ontario, Canada.L’étude porte sur 73 patients atteints d’ADPKD et 81 445 patients témoins ayant subi une urétéroscopie entre le 1Le risque dans les 30 jours de: 1) visite à l’hôpital pour des complications liées à l’urétéroscopie (résultat composite d’une visite aux urgences ou d’une admission en raison d’une insuffisance rénale aiguë, d’une infection urinaire ou d’un sepsis); 2) toute autre cause de visite à l’hôpital; 3) toute autre cause d’admission; et 4) toute autre cause de visite aux urgences.Une régression de Poisson modifiée a été employée pour l’analyze des résultats sur les variables démographiques, l’utilization des soins de santé au cours de l’année précédente, les différentes procédures et maladies concomitantes liées au résultat au cours des cinq années précédentes et les médicaments prescrits au cours des 120 derniers jours afin de comparer le rapport de risque (RR) de chaque résultat entre les patients atteints ou non d’ADPKD.L’âge médian des sujets (écart interquartile) s’établissait à 44 ans (38-60 ans) dans le groupe de patients ADPKD et à 53 ans (42-64 ans) dans le groupe témoin; les femmes représentaient environ 40 % des sujets dans les deux groupes. Le risque de complications liées à l’urétéroscopie n’était pas significativement différent entre le groupe ADPKD et le groupe témoin (8,2 % vs 4,2 %; RR corrigé: 1,5; IC 95 %: 0,7 à 3,2). Tous les patients, avec ou sans ADPKD, étaient plus susceptibles de se présenter à l’hôpital après l’intervention (36,6 % vs 20,0 %; RR corrigé: 1,6; IC 95 %: 1,2 à 2,2). Ce résultat incluait un risque significativement plus élevé de se présenter aux urgences (32,9 % vs 19,0 %; RR corrigé: 1,6; IC 95 %: 1,1 à 2,2), mais pas d’être hospitalisé (11 % vs 5 %; RR corrigé: 1,8; IC 95 %: 0,9 à 3,4).Le faible nombre d’événements a mené à l’imprécision des estimations.Les patients atteints d’ADPKD présentent un risque accru de retourner à l’hôpital dans les 30 jours suivant une urétéroscopie pour traiter des calculs urinaires.L’étude n’a pas été enregistrée.

BackgroundPeople who inject drugs (PWID) have been identified as frequent users of emergency department (ED) and hospital inpatient services. The specific challenges of record linkage in cohorts with numerous administrative health records occurring in close proximity are not well understood. Here, we present a method for patient-specific record linkage of ED and hospital admission data for a cohort of PWID.MethodsData from 688 PWID were linked to two state-wide administrative health databases identifying all ED visits and hospital admissions for the cohort between January 2008 and June 2013. We linked patient-specific ED and hospital admissions data, using administrative date-time timestamps and pre-specified linkage criteria, to identify hospital admissions stemming from ED presentations for a given individual. The ability of standalone databases to identify linked ED visits or hospital admissions was examined.ResultsThere were 3459 ED visits and 1877 hospital admissions identified during the study period. Thirty-four percent of ED visits were linked to hospital admissions. Most links had hospital admission timestamps in-between or identical to their ED visit timestamps (n = 1035, 87%). Allowing 24-h between ED visits and hospital admissions captured more linked records, but increased manual inspection requirements. In linked records (n = 1190), the ED ‘departure status’ variable correctly reflected subsequent hospital admission in only 68% of cases. The hospital ‘admission type’ variable was non-specific in identifying if a preceding ED visit had occurred.ConclusionsLinking ED visits with subsequent hospital admissions in PWID requires access to date and time variables for accurate temporal sorting, especially for same-day presentations. Selecting time-windows to capture linked records requires discretion. Researchers risk under-ascertainment of hospital admissions if using ED data alone.

Administrative health data is recognized for its value for conducting population-based research that has contributed to numerous improvements in health. In Canada, each province and territory is responsible for administering its own publicly funded health care program, which has resulted in multiple sets of administrative health data. Challenges to using these data within each of these jurisdictions have been identified, which are further amplified when the research involves more than one jurisdiction. The benefits to conducting multi-jurisdictional studies has been recognized by the Canadian Institutes of Health Research (CIHR), which issued a call in 2017 for proposals that address the challenges. The grant led to the creation of Health Data Research Network Canada (HDRN), with a vision is to establish a distributed network that facilitates and accelerates multi-jurisdictional research in Canada. HDRN received funding for seven years that will be used to support the objectives and activities of an initiative called the Strategy for Patient-Oriented Research Canadian Data Platform (SPOR-CDP). In this paper, we describe the challenges that researchers face while using, or considering using, administrative health data to conduct multi-jurisdictional research and the various ways that the SPOR-CDP will attempt to address them. Our objective is to assist other groups facing similar challenges associated with undertaking multi-jurisdictional research.

BackgroundLittle is known regarding risk for co-occurring mental health conditions among pediatric patients with congenital adrenal hyperplasia (CAH). The objective of the current study was to investigate the prevalence of medically managed attention-deficit/hyperactivity disorder (ADHD) in 2 large administrative samples of insured children and adolescents with and without CAH in the United States.MethodsWe assessed the prevalence of CAH and of medically managed ADHD using algorithms defined from diagnosis codes and filled prescriptions data using the IBM MarketScan Commercial and Multi-State Medicaid claims databases. We evaluated subjects who were continuously enrolled for ≥ 12 months with a first claim during October 2015 through December 2017 when they were 5 to 18 years old.ResultsThe administrative prevalence of CAH in the Commercial (N = 3 685 127) and Medicaid (N = 3 434 472) samples was 10.1 per 100 000 (n = 372) and 7.2 per 100 000 (n = 247), respectively. The prevalence of medically managed ADHD in the non-CAH population was 8.4% in the Commercial sample and 15.1% in the Medicaid sample. Among children with CAH, there was no increased prevalence of ADHD in the Commercial (9.2%, prevalence ratio [PR] = 1.1; 95% confidence interval [CI], 0.82-1.54; P = 0.48) or Medicaid (13.8%; PR = 0.91; 95% CI, 0.67–1.24; P = 0.55) samples compared with the general population.ConclusionsUsing 2 large samples of insured children and adolescents in the United States, we found similar prevalence of medically managed ADHD among those with CAH and the general population. Future research to assess the validity of our claims algorithm for identifying pediatric CAH cases is warranted.

This article reconsiders the role of social origin in health selection by examining whether parental education moderates the association between early health and educational attainment and whether health problems mediate the intergenerational transmission of education. We used longitudinal register data on Finns born in 1986–1991 (n = 352,899). We measured the completion of secondary and tertiary education until age 27 and used data on hospital care and medication reimbursements to assess chronic somatic conditions, frequent infections, and mental disorders at ages 10–16. We employed linear probability models to estimate the associations between different types of health problems and educational outcomes and to examine moderation by parental education, both overall in the population and comparing siblings with and without health problems. Finally, we performed a mediation analysis with g-computation to simulate whether a hypothetical eradication of health problems would weaken the association between parental and offspring education. All types of health problems reduced the likelihood of secondary education, but mental disorders were associated with the largest reductions. Among those with secondary education, there was further evidence of selection to tertiary education. High parental education buffered against the negative impact of mental disorders on completing secondary education but exacerbated it in the case of tertiary education. The simulated eradication of health problems slightly reduced disparities by parental education in secondary education (up to 10%) but increased disparities in tertiary education (up to 2%). Adolescent health problems and parental education are strong but chiefly independent predictors of educational attainment. Electronic supplementary material The online version of this article (10.1007/s13524-020-00919-y) contains supplementary material, which is available to authorized users.

Background Cryptococcosis is one of the most common life-threatening opportunistic mycoses worldwide. Insidious presentation and slow onset of symptoms make it difficult to recognize, complicating the diagnostic process. Delays in diagnosis may lead to increased mortality. We aim to determine the frequency of missed opportunities for diagnosis of cryptococcosis and its effects on mortality. Methods To estimate the proportion of individuals with a potentially missed diagnosis for cryptococcosis in hospitalized patients, we conducted a retrospective cohort study using the Healthcare Cost and Utilization Project State Inpatient Databases from 2005 to 2015 from eight states. All hospitalized adult patients diagnosed with cryptococcal infection or cryptococcal meningitis were included. Potentially missed diagnoses were defined as admissions coded for a procedure or diagnosis suggestive of cryptococcosis in the 90-days prior to the initial cryptococcosis admission. Generalized estimating equations models were used to evaluate the association between underlying comorbidities and potential missed diagnosis of cryptococcosis and 90-day all-cause in-hospital mortality. Findings Of 5,354 patients with cryptococcosis, 2,445 (45·7%) were people living with HIV (PLWH). Among PLWH, 493/2,445 (20·2%) had a potentially missed diagnosis, of which 83/493 (16·8%) died while hospitalized compared with 265/1,952 (13·6%) of those without a potentially missed diagnosis (relative risk [RR] 1·04, 95% CI 0·99–1·09). Among HIV-negative patients, 977/2,909 (33·6%) had a potentially missed diagnosis, of which 236/977 (24·2%) died while hospitalized compared with 298/1,932 (15·4%) of those not missed (RR 1·12, 95% CI 1·07–1·16). Interpretation Missed opportunities to diagnose cryptococcosis are common despite highly efficacious diagnostic tests and are associated with increased risk of 90-day mortality in HIV-negative patients. A high index of clinical suspicion is paramount to promptly diagnose, treat, and improve cryptococcosis-related mortality. Funding National Center for Advancing Translational Sciences, Washington University Institute of Clinical and Translational Sciences, and the Agency for Healthcare Research and Quality.

The purpose of this analysis was to develop and validate computable phenotypes for heart failure (HF) with preserved ejection fraction (HFpEF) using claims‐type measures using the Rochester Epidemiology Project. This retrospective study utilized an existing cohort of Olmsted County, Minnesota residents aged ≥ 20 years diagnosed with HF between 2007 and 2015. The gold standard definition of HFpEF included meeting the validated Framingham criteria for HF and having an LVEF ≥ 50%. Computable phenotypes of claims‐type data elements (including ICD‐9/ICD‐10 diagnostic codes and lab test codes) both individually and in combinations were assessed via sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) with respect to the gold standard. In the Framingham‐validated cohort, 2,035 patients had HF; 1,172 (58%) had HFpEF. One in‐patient or two out‐patient diagnosis codes of ICD‐9 428.3X or ICD‐10 I50.3X had 46% sensitivity, 88% specificity, 84% PPV, and 54% NPV. The addition of a BNP/NT‐proBNP test code reduced sensitivity to 35% while increasing specificity to 91% (PPV = 84%, NPV = 51%). Broadening the diagnostic codes to ICD‐9 428.0, 428.3X, and 428.9/ICD‐10 I50.3X and I50.9 increased sensitivity at the expense of decreasing specificity (diagnostic code‐only model: 87% sensitivity, 8% specificity, 56% PPV, 30% NPV; diagnostic code and BNP lab code model: 61% sensitivity, 43% specificity, 60% PPV, 45% NPV). In an analysis conducted to mimic real‐world use of the computable phenotypes, any one in‐patient or out‐patient code of ICD‐9 428/ICD‐10 150 among the broader population (N = 3,755) resulted in lower PPV values compared with the Framingham cohort. However, one in‐patient or two out‐patient instances of ICD‐9 428.0, 428.9, or 428.3X/ICD‐10 150.3X or 150.9 brought the PPV values from the two cohorts closer together. While some misclassification remains, the computable phenotypes defined here may be used in claims databases to identify HFpEF patients and to gain a greater understanding of the characteristics of patients with HFpEF.

Background There is growing evidence that the cost for dementia care will increase rapidly in the coming years. Therefore, the objective of this paper was to determine the economic impact of treating clients with dementia in outpatient Dementia Service Centres (DSCs) and simulate the cost progression with real clinical and cost data. Methods To estimate the cost for dementia care, real administrative and clinical data from 1341 clients of the DSCs were used to approximate the total cost of non-pharmaceutical treatment and simulate the cost progression with a discrete-time Markov chain (DTMC) model. The economic simulation model takes severity and progression of dementia into account to display the cost development over a period of up to ten years. Results Based on the administrative data, the total cost for treating these 1341 clients of the DSCs came to 67,294,910 EUR in the first year. From these costs, 74% occurred as indirect costs. Within a five-year period, these costs will increase by 7.1-fold (16.2-fold over 10 years). Further, the DTMC shows that the greatest share of the cost increase derives from the sharp increase of people with severe dementia and that the cost of severe dementia prevails the cost in later periods. Conclusion The DTMC model has shown that the cost increase of dementia care is mostly driven by the indirect cost and the increase of severity of dementia within any given year. The DTMC reveals also that the cost for mild dementia will decrease steadily over the time period of the simulation, whereas the cost for severe dementia increases sharply after running the simulation for 3 years.

The international research community is mobilising an unprecedented response to COVID-19, including more than 2500 registered clinical trials [1, 2]. There are also at least 100 observational studies based on administrative and routinely collected healthcare data [3, 4]. The small upfront effort to allow linkage of administrative data, registries, electronic medical records, and personal health records (collectively referred to as medical databases) to the trial data should create significant returns in scientific insight. However, to our knowledge, only a small number of COVID-19 trials are leveraging medical databases by linking to them. The solution is simple and is a golden opportunity which should not be missed. As demonstrated by the West of Scotland Coronary Prevention Study (WOSCOPS) 20-year Followup Study [5], a major advantage of linkage is that administrative data can be used for follow up so that researchers can identify events that occur, including those that happen long after the study’s original time period for active assessment of participants has ended. More specifically, the WOSCOPS 20- year Follow-up Study found that statin treatment for five years in the original 1989 trial was associated with a legacy benefit, with improved survival and a substantial reduction in cardiovascular disease outcomes over a 20-year period in a high-risk cohort of men [6]. Further, the cost of follow-up assessment using medical databases was very low compared to the bespoke data collection of the original trial, costing on the order of tens of thousands rather than millions of dollars [7]. More recently, the UK RECOVERY trial of therapies for COVID-19 was the first to identify a survival benefit of dexamethasone in high-risk hospitalised patients with COVID-19. The study included linkage of trial-specific data and data from routine healthcare and registry sources. Using expedited access to existing medical databases, RECOVERY investigators were able rapidly to determine information on vital status (e.g., date and cause of death); discharge from hospital; intensive care use; and renal replacement therapy [8]. The RECOVERY trial’s speed and comprehensiveness deserve praise [9], both of which were enabled by linkage to medical databases. Linkage to medical databases in trials can reduce cost (and thereby allow larger trials within an existing budget), increase speed (particularly if near real-time data flows can be achieved), support more complete long-term follow-up, and allow multiple outcomes to be monitored. In the case of COVID-19, it could also help researchers go beyond prospective analysis and forecasts based on COVID-19 cases, bringing in additional information about patient characteristics and past health system use. Combining clinical and health services research expertise will increase our understanding of the relevance of comorbidities, demographic factors and prior health system utilisation on the effects of COVID-19. As per the WOSCOPS 20-year Follow up Study example, linkage could also enable the assessment of the long-term impacts of interventions for COVID19, including experimental drugs and vaccines, years after clinical trials end, and at greatly reduced cost relative to bespoke data collection. Rare outcomes could be studied at scale and provide robust evidence regarding the safety of new vaccines, and thereby reassure regulators and the public that potential risks are carefully monitored [10]. There are, of course, caveats. Use of medical databases in trials requires full understanding of data quality limitations, excellent knowledge of database holdings, and case validation work [7]. It is also important that the public and trial participants support use of their data in trials [7, 11, 12]. Effective partnerships between trialists and medical database stewards will be essential, and Health Data Research UK (HDR UK) and Health Data Research Network Canada (HDRN Canada) have already begun to support this. For example, HDRN Canada organisations have developed standardised text that trialists can use when seeking participant informed consent for data linkage [13, 14], and the HDR UK Health Data Hub for clinical trials, NHS DigiTrials, delivered in partnership with NHS Digital, is providing services to improve the assessment of clinical trial feasibility, which has successfully contributed to the RECOVERY trial [15, 16]. Many countries around the world are creating COVID-19 trial datasets and databases of COVID-19-related data such as test results that cover entire populations. It is our strong recommendation, and sincere hope, that these data assets will be brought together through record linkage so that their scientific value and impact for society can be amplified. We call on trialists, data stewards and research funders to work together so that prospective linkage of trial data to medical databases becomes the norm, starting with COVID-19 trials.

In Australia, disease registers for acute rheumatic fever (ARF) and rheumatic heart disease (RHD) were previously established to facilitate disease surveillance and control, yet little is known about the extent of case-ascertainment. We compared ARF/RHD case ascertainment based on Australian ARF/RHD register records with administrative hospital data from the Northern Territory (NT), South Australia (SA), Queensland (QLD) and Western Australia (WA) for cases 3&ndash, 59 years of age. Agreement across data sources was compared for persons with an ARF episode or first-ever RHD diagnosis. ARF/RHD registers from the different jurisdictions were missing 26% of Indigenous hospitalised ARF/RHD cases overall (ranging 17&ndash, 40% by jurisdiction) and 10% of non-Indigenous hospitalised ARF/RHD cases (3&ndash, 28%). The proportion of hospitalised RHD cases (36%) was half the proportion of hospitalised ARF cases (70%) notified to the ARF/RHD registers. The registers were found to capture few RHD cases in metropolitan areas (SA Metro: 13%, QLD Metro: 35%, WA Metro: 14%). Indigenous status, older age, comorbidities, drug/alcohol abuse and disease severity were predictors of cases appearing in the hospital data only (p &lt, 0.05), sex was not a determinant. This analysis confirms that there are biases associated with the epidemiological analysis of single sources of case ascertainment for ARF/RHD using Australian data.