Attitudes, Knowledge, and Risk Perceptions of Patients who Received Elective Genomic Testing as a Clinical Service.

BACKGROUND: Elective genomic testing (EGT) is increasingly available clinically. Limited real world evidence exists about attitudes and knowledge of EGT recipients. METHODS: After web-based education, patients who enrolled in an EGT program at a rural nonprofit healthcare system completed a survey that assessed attitudes, knowledge, and risk perceptions. RESULTS: From August 2020 to April 2022, 5,920 patients completed the survey and received testing. Patients most frequently cited interest in learning their personal disease risks as their primary motivation. Patients most often expected results to guide medication management (74.0%), prevent future disease (70.4%), and provide information about risks to offspring (65.4%). Patients were "very concerned" most frequently about the privacy of genetic information (19.8%) and how well testing predicted disease risks (18.0%). On average, patients answered 6.7 of 11 knowledge items correctly (61.3%). They more often rated their risks for colon and breast cancers as lower rather than higher than the average person, but more often rated their risk for a heart attack as higher rather than lower than the average person (all p<0.001). CONCLUSION: Patients pursued EGT because of the utility expectations, but often misunderstood the test's capabilities.

Variation in completeness of coding external cause of injuries under ICD-10-CM.

INTRODUCTION: Information about causes of injury is key for injury prevention efforts. Historically, cause-of-injury coding in clinical practice has been incomplete due to the need for extra diagnosis codes in the International Classification of Diseases-Ninth Revision-Clinical Modification (ICD-9-CM) coding. The transition to ICD-10-CM and increased use of clinical support software for diagnosis coding is expected to improve completeness of cause-of-injury coding. This paper assesses the recording of external cause-of-injury codes specifically for those diagnoses where an additional code is still required. METHODS: We used electronic health record and claims data from 10 health systems from October 2015 to December 2021 to identify all inpatient and emergency encounters with a primary diagnosis of injury. The proportion of encounters that also included a valid external cause-of-injury code is presented. RESULTS: Most health systems had high rates of cause-of-injury coding: over 85% in emergency departments and over 75% in inpatient encounters with primary injury diagnoses. However, several sites had lower rates in both settings. State mandates were associated with consistently high external cause recording. CONCLUSIONS: Completeness of cause-of-injury coding improved since the adoption of ICD-10-CM coding and increased slightly over the study period at most sites. However, significant variation remained, and completeness of cause-of-injury coding in any diagnosis data used for injury prevention planning should be empirically determined.

Therapeutic Drug Monitoring and Biomarkers; towards Better Dosing of Antimicrobial Therapy.

Due to variability in pharmacokinetics and pharmacodynamics, clinical outcomes of antimicrobial drug therapy vary between patients. As such, personalised medication management, considering both pharmacokinetics and pharmacodynamics, is a growing concept of interest in the field of infectious diseases. Therapeutic drug monitoring is used to adjust and individualise drug regimens until predefined pharmacokinetic exposure targets are achieved. Minimum inhibitory concentration (drug susceptibility) is the best available pharmacodynamic parameter but is associated with many limitations. Identification of other pharmacodynamic parameters is necessary. Repurposing diagnostic biomarkers as pharmacodynamic parameters to evaluate treatment response is attractive. When combined with therapeutic drug monitoring, it could facilitate making more informed dosing decisions. We believe the approach has potential and justifies further research.

Taipei Medical University Clinical Research Database: a collaborative hospital EHR database aligned with international common data standards.

OBJECTIVE: The objective of this paper is to provide a comprehensive overview of the development and features of the Taipei Medical University Clinical Research Database (TMUCRD), a repository of real-world data (RWD) derived from electronic health records (EHRs) and other sources. METHODS: TMUCRD was developed by integrating EHRs from three affiliated hospitals, including Taipei Medical University Hospital, Wan-Fang Hospital and Shuang-Ho Hospital. The data cover over 15 years and include diverse patient care information. The database was converted to the Observational Medical Outcomes Partnership Common Data Model (OMOP CDM) for standardisation. RESULTS: TMUCRD comprises 89 tables (eg, 29 tables for each hospital and 2 linked tables), including demographics, diagnoses, medications, procedures and measurements, among others. It encompasses data from more than 4.15 million patients with various medical records, spanning from the year 2004 to 2021. The dataset offers insights into disease prevalence, medication usage, laboratory tests and patient characteristics. DISCUSSION: TMUCRD stands out due to its unique advantages, including diverse data types, comprehensive patient information, linked mortality and cancer registry data, regular updates and a swift application process. Its compatibility with the OMOP CDM enhances its usability and interoperability. CONCLUSION: TMUCRD serves as a valuable resource for researchers and scholars interested in leveraging RWD for clinical research. Its availability and integration of diverse healthcare data contribute to a collaborative and data-driven approach to advancing medical knowledge and practice.

Social determinants of health Z-code documentation practices in mental health settings: a scoping review.

Mental health remains an urgent global priority, alongside efforts to address underlying social determinants of health (SDoH) that contribute to the onset or exacerbate mental illness. SDoH factors can be captured in the form of International Classification of Disease, Tenth Revision, Clinical Modification (ICD-10-CM), SDoH Z codes. In this scoping review, we describe current SDoH Z-code documentation practices, with a focus on mental health care contexts. Among 2 743 061 374 health care encounters noted across 12 studies in the United States, SDoH Z-code documentation rates ranged from 0.5% to 2.4%. Documentation often involved patients under 64 years of age who are publicly insured and experience comorbidities, including depression, bipolar disorder and schizophrenia, chronic pulmonary disease, and substance abuse disorders. Documentation varied across hospital types, number of beds per facility, patient race/ethnicity, and geographic region. Variation was observed regarding patient sex/gender, although SDoH Z codes were more frequently documented for males. Documentation was most observed in government, nonfederal, and private not-for-profit hospitals. From these insights, we offer policy and practice recommendations, as well as considerations for patient data privacy, security, and confidentiality, to incentivize more routine documentation of Z codes to better assist patients with complex mental health care needs.

Short report: Transition to International Classification of Diseases, 10th Revision and the prevalence of autism in a cohort of healthcare systems.

LAY ABSTRACT: Currently, the prevalence of autism spectrum disorder (henceforth "autism") is 1 in 36, an increasing trend from previous estimates. In 2015, the United States adopted a new version (International Classification of Diseases, 10th Revision) of the World Health Organization coding system, a standard for classifying medical conditions. Our goal was to examine how the transition to this new coding system impacted autism diagnoses in 10 healthcare systems. We obtained information from electronic medical records and insurance claims data from July 2014 through December 2016 for each healthcare system. We used member enrollment data for 30 consecutive months to observe changes 15 months before and after adoption of the new coding system. Overall, the rates of autism per 1000 enrolled members was increasing for 0- to 5-year-olds before transition to International Classification of Diseases, 10th Revision and did not substantively change after the new coding was in place. There was variation observed in autism diagnoses before and after transition to International Classification of Diseases, 10th Revision for other age groups. The change to the new coding system did not meaningfully affect autism rates at the participating healthcare systems. The increase observed among 0- to 5-year-olds is likely indicative of an ongoing trend related to increases in screening for autism rather than a shift associated with the new coding.

Racial-Ethnic Differences in Receipt of Past-Year Health Care Services Among Suicide Decedents: A Case-Control Study.

OBJECTIVE: Suicide remains an urgent public health crisis. Although some sociodemographic characteristics are associated with greater suicide risk in the general population, it is unclear whether individuals utilizing health care in the United States have similar suicide incidence patterns. The authors examined whether race-ethnicity is associated with suicide death among patients seeking health care and investigated health care utilization patterns. METHODS: Data were collected from electronic health records and government mortality records for patients seeking health care across nine health care systems in the United States. Patients who died by suicide (N=1,935) were matched with patients in a control group (N=19,350) within each health care system. RESULTS: Patients who died by suicide were significantly more likely to be White, older, male, living in low-education areas, living in rural areas, or diagnosed as having mental health conditions or were significantly less likely to have commercial insurance (p<0.05). Among most racial-ethnic groups, those who died by suicide had a higher number of past-year mental health, primary care, and total health care visits; for American Indian/Alaska Native patients, the number of health care visits tended to be lower among suicide decedents. CONCLUSIONS: These findings suggest that higher past-year health care utilization was associated with increased likelihood of suicide death across several racial-ethnic groups. This observation underscores the need for identifying and managing suicide risk in health care settings, including outside of mental health visits, among most racial-ethnic groups.

Returning personalized, genetic health test results to individuals of African descent or ancestry in precision medicine research.

Today, many epidemiological studies and biobanks are offering to disclose individual genetic results to their participants, including the National Institutes of Health's All of Us Research Program. Returning hereditary disease risks and pharmacogenetic test results to study participants from racial/ethnic groups that are historically underrepresented in biomedical research poses specific challenges to those participants and the health system writ large. For example, individuals of African descent are underrepresented in research about drug-gene interactions and have a relatively higher proportion of variants of unknown significance, affecting their ability to take clinical action following return of results. In this brief report, we summarize studies published to date concerning the perspectives and/or attitudes of African Americans engaged in genetic research programs to anticipate factors in disclosure protocols that would minimize risks and maximize benefits. A thematic analysis of studies identified (n = 6) lends to themes centered on motivations to engage or disengage in the return of results and integrating research and care. Actionable strategies determined in reaction to these themes center on ensuring adequate system and health education support for participants and personalizing the process for participants engaging in return of results. Overall, we offer these themes and actionable strategies as early guidance to research programs, and provide recommendations to policy makers focused on fair and equitable return of genetic research results to underrepresented research participants.

"Go ahead and screen" - advice to healthcare systems for routine lynch syndrome screening from interviews with newly diagnosed colorectal cancer patients.

BACKGROUND: Lynch syndrome (LS) is the most common cause of inherited colorectal cancer (CRC). Universal tumor screening (UTS) of newly diagnosed CRC cases is recommended to aid in diagnosis of LS and reduce cancer-related morbidity and mortality. However, not all health systems have adopted UTS processes and implementation may be inconsistent due to system and patient-level complexities. METHODS: To identify barriers, facilitators, and suggestions for improvements of the UTS process from the patient perspective, we conducted in-depth, semi-structured interviews with patients recently diagnosed with CRC, but not screened for or aware of LS. Patients were recruited from eight regionally diverse US health systems. Interviews were conducted by telephone, 60-minutes, audio-recorded, and transcribed. An inductive, constant comparative analysis approach was employed.  RESULTS: We completed 75 interviews across the eight systems. Most participants were white (79%), about half (52%) were men, and the mean age was 60 years. Most self-reported either no (60%) or minimal (40%) prior awareness of LS. Overall, 96% of patients stated UTS should be a routine standard of care for CRC tumors, consistently citing four primary motivations for wanting to know their LS status and engage in the process for LS identification: "knowledge is power"; "family knowledge"; "prevention and detection"; and "treatment and surveillance." Common concerns pertaining to the process of screening for and identifying LS included: creating anticipatory worry for patients, the potential cost and the accuracy of the genetic test, and possibly having one's health insurance coverage impacted by the LS diagnosis. Patients suggested health systems communicate LS results in-person or by phone from a trained expert in LS; offer proactive verbal and written education about LS, the screening steps, and any follow-up surveillance recommendations; and support patients in communicating their LS screening to any of their blood relatives. CONCLUSION: Our qualitative findings demonstrate patients with CRC have a strong desire for healthcare systems to regularly implement and offer UTS. Patients offer key insights for health systems to guide future implementation and optimization of UTS and other LS screening programs and maximize diagnosis of individuals with LS and improve cancer-related surveillance and outcomes. TRIAL REGISTRATION: Not available: not a clinical trial.

Suicide among Cancer Patients: Current Knowledge and Directions for Observational Research.

Cancer is a major public health concern associated with an increased risk of psychosocial distress and suicide. The reasons for this increased risk are still being characterized. The purpose of this study is to highlight existing observational studies on cancer-related suicides in the United States and identify gaps for future research. This work helps inform clinical and policy decision-making on suicide prevention interventions and ongoing research on the detection and quantification of suicide risk among cancer patients. We identified 73 peer-reviewed studies (2010-2022) that examined the intersection of cancer and suicide using searches of PubMed and Embase. Overall, the reviewed studies showed that cancer patients have an elevated risk of suicide when compared to the general population. In general, the risk was higher among White, male, and older cancer patients, as well as among patients living in rural areas and with lower socioeconomic status. Future studies should further investigate the psychosocial aspects of receiving a diagnosis of cancer on patients' mental health as well as the impact of new treatments and their availability on suicide risk and disparities among cancer patients to better inform policies.

Association Between Adverse Social Determinants of Health and Suicide Death.

OBJECTIVE: The aim of this study was to identify adverse social determinants of health (SDoH) International Statistical Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) code prevalence among individuals who died by suicide and to examine associations between documented adverse SDoH and suicide. RESEARCH DESIGN: A case-control study using linked medical record, insurance claim, and mortality data from 2000 to 2015 obtained from 9 Mental Health Research Network-affiliated health systems. We included 3330 individuals who died by suicide and 333,000 randomly selected controls matched on index year and health system location. All individuals in the study (cases and controls) had at least 10 months of enrollment before the study index date. The index date for the study for each case and their matched controls was the suicide date for that given case. RESULTS: Adverse SDoH documentation was low; only 6.6% of cases had ≥1 documented adverse SDoH in the year before suicide. Any documented SDoH and several specific adverse SDoH categories were more frequent among cases than controls. Any documented adverse SDoH was associated with higher suicide odds [adjusted odds ratio (aOR)=2.76; 95% CI: 2.38-3.20], as was family alcoholism/drug addiction (aOR=18.23; 95% CI: 8.54-38.92), being an abuse victim/perpetrator (aOR=2.53; 95% CI: 1.99-3.21), other primary support group problems (aOR=1.91; 95% CI: 1.32-2.75), employment/occupational maladjustment problems (aOR=8.83; 95% CI: 5.62-13.87), housing/economic problems (aOR: 6.41; 95% CI: 4.47-9.19), legal problems (aOR=27.30; 95% CI: 12.35-60.33), and other psychosocial problems (aOR=2.58; 95% CI: 1.98-3.36). CONCLUSIONS: Although documented SDoH prevalence was low, several adverse SDoH were associated with increased suicide odds, supporting calls to increase SDoH documentation in medical records. This will improve understanding of SDoH prevalence and assist in identification and intervention among individuals at high suicide risk.

A novel prediction model of the risk of pancreatic cancer among diabetes patients using multiple clinical data and machine learning.

INTRODUCTION: Pancreatic cancer is associated with poor prognosis. Considering the increased global incidence of diabetes cases and that individuals with diabetes are considered a high-risk subpopulation for pancreatic cancer, it is critical to detect the risk of pancreatic cancer within populations of person living = with diabetes. This study aimed to develop a novel prediction model for pancreatic cancer risk among patients with diabetes, using = a real-world database containing clinical features and employing numerous artificial intelligent approach algorithms. METHODS: This retrospective observational study analyzed data on patients with Type 2 diabetes from a multisite Taiwanese EMR database between 2009 and 2019. Predictors were selected in accordance with the literature review and clinical perspectives. The prediction models were constructed using machine learning algorithms such as logistic regression, linear discriminant analysis, gradient boosting machine, and random forest. RESULTS: The cohort consisted of 66,384 patients. The Linear Discriminant Analysis (LDA) model generated the highest AUROC of 0.9073, followed by the Voting Ensemble and Gradient Boosting machine models. LDA, the best model, exhibited an accuracy of 84.03%, a sensitivity of 0.8611, and a specificity of 0.8403. The most significant predictors identified for pancreatic cancer risk were glucose, glycated hemoglobin, hyperlipidemia comorbidity, antidiabetic drug use, and lipid-modifying drug use. CONCLUSION: This study successfully developed a highly accurate 4-year risk model for pancreatic cancer in patients with diabetes using real-world clinical data and multiple machine-learning algorithms. Potentially, our predictors offer an opportunity to identify pancreatic cancer early and thus increase prevention and invention windows to impact survival in diabetic patients.

The Impact of Prescribing Monitoring Policy on Drug Use and Expenditures in China: A Multi-center Interrupted Time Series Study.

BACKGROUND: A prescribing monitoring policy (PMP) was implemented in November 2015 in Anhui province, China, the first province to pilot this policy to manage the use and costs of select drugs based on their large prescription volumes and/ or costs in hospitals. This study evaluated the impact of PMP on the use and expenditures of different drugs in three tertiary hospitals in Anhui. METHODS: We obtained monthly drug use and expenditures data from three tertiary hospitals in Anhui (November 2014 through September 2017). An interrupted time series (ITS) design was used to estimate changes in defined daily doses (DDDs per month) and drug expenditures (dollars per month) of policy-targeted and non-targeted drugs after PMP implementation. Drugs were grouped based on whether they were recommended (recommended drugs) by any clinical guidelines or not (non-recommended drugs), or if they were potentially over-used (proton pump inhibitors, PPIs). RESULTS: After PMP, DDDs and costs of the targeted PPIs (omeprazole) declined while use of non-targeted PPIs increased correspondingly with overall sustained declines in total PPIs. The policy impact on recommended drugs varied based on whether the targeted drugs have appropriate alternatives. The DDDs and costs of recommended drugs that have readily accessible appropriate alternatives (atorvastatin) declined, which offset increases in its alternative non-target drugs (rosuvastatin), while there was no significant change in those recommended drugs that did not have appropriate alternative drugs (clopidogrel and ticagrelor). Finally, the DDDs and costs of non-recommended drugs decreased significantly. CONCLUSION: PMP policy impact was not the same across different drug groups. PMP did help contain the use and costs of potentially over-used drugs and non-recommended drugs. PMP did not seem to reduce the use of first-line therapeutic drugs recommended by clinical treatment guidelines, especially those lacking alternatives; such drugs are unlikely appropriate candidates for PMP.

Risk of suicide among stroke survivors in the United States.

BACKGROUND: Stroke is the largest cause of disability and the 5th leading cause of death in the United States. Suicide is the 12th leading cause of death in the United States. However, little is known about the risk of suicide among people with a prior stroke. OBJECTIVES: Using Multiple Cause of Death data (1999-2020) from the Centers for Disease Control and Prevention WONDER database, we examined via cross-sectional analysis the risk of suicide among survivors of stroke as compared to the general U.S. population and among subgroups within the United States. METHODS: We assessed disparities in suicide rate among patients with stroke stratified by sex, race, urbanization levels, and census regions using the CDC WONDER multiple cause of death database. Standardized mortality rates were calculated to compare the suicide rate of stroke patients with the rates among demographic-matched cohorts and the general United States population. RESULTS: As compared to the general population, stroke survivors had an elevated risk of suicide. Black stroke survivors had a lower rate of suicide as compared to the general population, while White stroke survivors and those in nonmetropolitan areas had an elevated risk compared to the general population. CONCLUSION: There was a slightly elevated risk of suicide among people with a prior stroke in the United States. This risk may be elevated among White people and among people living in nonmetropolitan areas.

Regulating Direct-to-Consumer Polygenic Risk Scores.

This Viewpoint discusses the possible harms associated with direct-to-consumer polygenic risk scores and advocates for federal regulation.

Suicide Risk Among Patients With Heart Disease and Heart Failure.

Heart disease is the leading cause of death in the United States (US). Suicide is the 12th leading cause of death. However, little is known about the risk of suicide in patients with heart disease and heart failure. Using Multiple Cause of Death data from the Centers for Disease Control and Prevention (CDC) Wide-ranging ONline Data for Epidemiologic Research (WONDER) database, we used a cross-sectional analysis to examine the risk of suicide in patients with heart disease and heart failure as compared with the general US population and in subgroups within the US. We assessed suicide rate in patients with heart disease and heart failure in the US population as a whole and stratified by race, time, urbanization levels, and census regions using the CDC WONDER Multiple Cause of Death database. Standardized mortality rates were calculated as observed deaths divided by expected deaths. As compared with the general population, patients with heart disease and heart failure had an elevated risk of suicide. This was true across racial and geographic subgroups. There was an elevated risk of suicide in patients with heart disease and heart failure in the United States. For heart disease, there were particular elevations in the Western US, and there was a particular elevation in Black Americans compared with the age-matched population.