Electronic Health Record Review Research Articles

Identifying Adolescent Suicide Risk via Depression Screening in Pediatric Primary Care: An Electronic Health Record Review.

The authors evaluated suicide risk rates detected via a depression screener administered within a large pediatric primary care system and examined 1-year follow-up care after adolescents' endorsement of suicide risk. Retrospective electronic health record data were extracted to examine both suicide risk rates from items endorsed on the Patient Health Questionnaire-Modified for Teens (PHQ-9-M) and primary care providers' (PCPs') follow-up suicide risk assessments on the day of depression screening among adolescents ages 12-18 years during the period of September 1, 2014, to August 31, 2016. Manual chart review was conducted, and charts were coded for several follow-up care actions (e.g., referral to behavioral health providers and provision of crisis line information) in the year after suicidality endorsement. In a sample of 12,690 adolescents, 5.1% endorsed thoughts of death or self-harm, 3.6% reported a lifetime suicide attempt, and 2.4% endorsed serious suicidal ideation within the past month. Manual chart review of a stratified random subsample of 150 of the 643 adolescents who endorsed a lifetime suicide attempt, serious ideation in the past month, or both illustrated the types of follow-up care they received. The PCPs adhered to the system's suicide assessment questions with high fidelity. Follow-up care from PCPs and other providers during the year after suicide risk endorsement was more variable. Findings demonstrate the feasibility of incorporating suicide assessment procedures into depression screening in pediatric primary care and highlight avenues for maximizing preventive care for adolescents at increased risk for suicide.

The Frequency of Poor Sleep Quality in Patients With Diabetes Mellitus and Its Association With Glycemic Control.

Background and objectiveEmerging evidence suggests that sleep problems are more common among individuals with diabetes mellitus (DM) than in the general population; these sleep issues are associated with poor glycemic control and they negatively affect the overall prognosis of the disease by increasing cardiometabolic risk. Our study aimed to determine the frequency of poor sleep quality and its association with glycemic control among Pakistani adult patients with DM.MethodsThis prospective cross-sectional study was conducted at the outpatient department (OPD) of The Indus Hospital (TIH), Karachi, and included 329 participants. To be eligible, participants had to be 14 years or older, should have been visiting the OPD at TIH for six months or more to seek treatment for DM, and had to give informed consent. Participants were assessed for poor sleep quality using the Pittsburgh Sleep Quality Index (PSQI) score and glycemic control using HbA1C levels ascertained through electronic health record review, with higher HbA1C levels reflecting poorer glycemic control.ResultsTwo-thirds of the participants were females (n=212; 64.4%), and approximately 90% of the participants were married (n=292; 88.8%); 57% (n=188) of the participants were found to have poor sleep quality (PSQI of >5) and 233 (70.82%) had poor glycemic control (HbA1C of >7). Interestingly, no significant difference was observed in the PSQI scores between participants with controlled diabetes and those with uncontrolled diabetes.ConclusionBased on our findings, there is a high prevalence of sleep disturbance among Pakistani adults with DM, and we believe this necessitates the fostering of sleep-promoting interventional research in the country, as it might be highly rewarding and would positively affect the overall prognosis for diabetes by improving cardiometabolic risks. However, our results did not indicate any significant association between sleep quality and glycemic control. Further research should be conducted to explore the association between sleep disturbance and DM in Pakistani adults, by employing objective measures of sleep quality and involving a larger sample of individuals with DM to determine if these results hold true.

Abstract 16882: Exercise Prescription Patterns After Spontaneous Coronary Artery Dissection: Insights From a Large Multinational Registry

Introduction: Spontaneous coronary artery dissection (SCAD) is an important cause of myocardial infarction in otherwise healthy and most times presumably fit young women. In the absence of evidence for benefit or harm, exercise prescription (EXP) after SCAD remains arbitrary. We assessed EXP patterns among participants in a large multinational SCAD registry. Methods: Participants with SCAD as confirmed by coronary angiography completed surveys detailing exercise (EX) habits prior to SCAD (initial survey), and EXP from their provider on initial and subsequent visits after SCAD (follow-up survey). Demographic and clinical characteristics were collected by electronic health record review by trained nurse abstractors. EXP was categorized according to EX components that include: type, intensity, frequency, time/session, and external conditions. Results: Among 950 participants, mean ± age was 46.8 ± 9.5 years, 96% were women and 77% reported attending ≥1 Cardiopulmonary Rehabilitation session. Prior to SCAD, 49% were aerobically exercising ≥ 3times per week, and only 32% performed strength-building EX regularly. Initial and subsequent post-SCAD visit details in 299/950 participants showed that most (93%) patients received some form of EX (Figure 1-A) counseling, namely: EXP, unspecific advice or were discouraged from any EX (Figure 1-B) . Limits regarding EX type and intensity were the most common advice received among EXP group (Figure 1-C) . Conclusions: Insights from our study show that only 40% of patients were achieving current exercise recommendations for adults prior to SCAD (vs 53% adult U.S population; CDC, 2018) which suggests that SCAD patients may not be as active as previously described. Most patients receive some form of EX counseling after SCAD; however, a structured EXP is needed to avoid overly cautious approaches that could lead to uncertainty, deconditioning, impaired quality of life, or increase risks associated with a sedentary lifestyle.

The accuracy of ICD‐CM codes to identify thromboembolic events for clinical outcomes research

AbstractIntroductionResearch using electronic health care databases continues to grow given widespread adoption of electronic health records (EHR). As manual record review is often not feasible with the increasing amount of data, use of International Statistical Classification of Diseases and Related Health Problems‐Clinical Modification (ICD‐CM) codes are a method of capturing the study population or abstracting outcomes. The accuracy of ICD‐CM coding and methodological validity of its use in medical research has been variable.ObjectivesTo compare the performance of ICD‐CM code data to pharmacist EHR review to identify patients that developed an in‐hospital thromboembolic event (TE) following four‐factor prothrombin complex concentrate (4F‐PCC) administration for anticoagulation reversal.MethodsA total of 337 patients were evaluated for TE occurrence following 4F‐PCC administration by two separate methods; discharge ICD‐CM code capture and pharmacist EHR review. To adjudicate ICD‐CM code and/or pharmacist‐identified TE cases, a blinded physician investigator reviewed the EHR and categorized the patient as having a TE or not based on extensive study definitions. To quantify the accuracy of ICD‐CM coding for patient outcome event and pharmacist investigator EHR review, positive predictive values (PPV) were calculated using physician review as the gold standard.ResultsA total of 76 cases were identified: 57 cases were identified by ICD‐CM codes only, 13 by pharmacist review only, and six by both ICD‐CM code and pharmacist review. Upon review by the physician investigator, 27 (35.5%) were identified as having an in‐hospital TE. There was a high degree of agreement between physician and pharmacist identification (88.2%). ICD‐CM code data demonstrated low PPV (22.2%) while pharmacist EHR review demonstrated high PPV (94.7%) for the identification of TE.ConclusionICD‐CM code data may be helpful in identifying study patients in large datasets, however low PPV for identification of TE requires clinician validation before acceptance as outcome data in clinical research.

Association of Maternal Prepregnancy Body Mass Index With Fetal Growth and Neonatal Thalamic Brain Connectivity Among Adolescent and Young Women

Higher maternal prepregnancy body mass index (BMI; calculated as weight in kilograms divided by height in meters squared) is associated with adverse long-term outcomes for offspring, including obesity, poorer cognitive and social abilities, and increased risk of psychiatric disorders. Less clear is whether higher maternal BMI disrupts fetal growth and brain development. To investigate the association of maternal prepregnancy BMI with fetal growth and neonatal functional connectivity. This prospective longitudinal cohort study was conducted from 2012 to 2017. Participants included nulliparous pregnant adolescent and young adult women, aged 14 to 19 years who were recruited in the second trimester through Columbia University Irving Medical Center and Weill Cornell Medical College. Women received routine prenatal care and had no major health problems at the time of recruitment. Data were analyzed from January 2018 to March 2020. Maternal prepregnancy BMI. The main outcomes were fetal growth, measured as estimated fetal weight, and neonatal functional connectivity, measured using magnetic resonance imaging. Prepregnancy BMI and fetal ultrasonographic measurements were obtained from electronic health record review. Resting-state brain imaging data were acquired in infants within the first month of postnatal life. Functional connectivity was measured using intrinsic functional distribution and seed-based methods. Among 129 women recruited, 105 had ultrasonographic data from at least 2 points and were included in analyses. The mean (SD) age at delivery was 17.82 (1.31) years. Maternal prepregnancy BMI was positively associated with the slope of estimated fetal weight (β = 0.668; 95% CI, 0.163 to 1.175; P = .01) but not with fetal head circumference (β = -0.004; 95% CI, -0.024 to 0.016; P = .70). In a subsample of 45 infants with magnetic resonance imaging data, maternal prepregnancy BMI was positively correlated with global connectivity in the left thalamus. Using this thalamic region as a seed, higher maternal BMI was associated with greater local thalamic (both hemispheres) and lower frontothalamic connectivity. These results suggest that maternal prepregnancy BMI was associated with the development of regulation of body weight and thalamic functional brain connectivity in offspring even during fetal development.

Primary care referrals to nephrology in patients with advanced kidney disease.

Optimizing care for patients with advanced kidney disease requires close collaboration between primary care physicians (PCPs) and nephrologists. Factors associated with PCP referral to nephrology were assessed in patients with estimated glomerular filtration rates (eGFRs) less than 30 mL/min/1.73 m2. Electronic health record review at an integrated health care network. Factors associated with referral status were identified using Fisher's exact tests, t tests, and multivariable logistic regression. Of 133,913 patients regularly seeing PCPs between October 2017 and September 2019, 1119 had a final eGFR less than 30 mL/min/1.73 m2 and were not on renal replacement therapy. Care was provided by 185 PCPs (61 practices). Analyses were restricted to the 97.1% (n = 1087) of patients who were African American or European American. Of these, 54.6% had not been referred to nephrology. Nonreferred patients had higher numbers of PCP visits (P = .004). In contrast, referred patients were younger, were more often African American, and had PCPs at the academic medical center (all P < .0001). Referred patients had more complex medical histories with higher Charlson Comorbidity Index scores, more hospitalizations, and greater numbers of inpatient days (all P < .0001). Analyses restricted to patients with serum creatinine concentration of at least 2 mg/dL yielded similar results. Age, number of hospitalizations, ancestry, academic physician, diabetic end-organ damage, peripheral vascular disease, and tumor status were independent predictors of nephrology referral. Impediments to appropriately timed nephrology referrals persist in patients with high likelihoods of progression to end-stage kidney disease. Improved access to nephrology care should be rapidly addressed to meet targets in the 2019 Executive Order on Advancing American Kidney Health.

A Comparison Study of Patient Characteristics and Outcomes for Use of Nitrous Oxide During Labor

This study describes the characteristics of women who used self-administered nitrous oxide during labor compared with nonusers, to show patterns of use of nitrous oxide as well as other pain medications and to identify differences in maternal and neonatal outcomes of women who used nitrous oxide compared with those who did not. Retrospective electronic health record review. This Institutional Review Board–approved study was conducted in an upper Midwestern, urban, magnet-designated, 75-bed quaternary perinatal center with greater than 5,000 births annually. The sample included two groups: 400 nitrous oxide users during a 26-month period (January 2015–March 2017) and a comparison group of 6,733 women who met nitrous oxide eligibility but who did not use it, during the same period. Women in the nitrous oxide group and the comparison group did not differ significantly with regard to age, race, ethnicity, preferred language, marital status, gestational diabetes, body mass index (on admission), or provider type at birth. Women in the nitrous oxide group were slightly more likely to have private insurance relative to the comparison population (81% vs. 75%, p < .05). Nitrous oxide users were also more likely to be nulliparous (61%) than women in the comparison group (43%, p < .001). Among women in the nitrous oxide group, most used intermittent administration, and 17% experienced side effects, the most common being dizziness and nausea. Half (48%) of women initiated nitrous oxide at 0–4-cm dilation. In the nitrous oxide–only group, there was a 50.5% conversion to epidural. There were no significant differences in instrumentation, lacerations, 5-minute Apgar scores < 7, special care nursery or NICU transfers, or shoulder dystocia between the two groups. Adjusted analysis also found no difference in first or second stage duration of labor or duration of stay from birth to discharge. Parity was associated with nitrous oxide use in labor in this study, with more nulliparous women choosing this option. Outcomes did not differ generally by user group after adjustment for covariates, and there were no safety concerns.

Patterns of anticonvulsant use and adverse drug events in older adults.

To examine indications for, duration of use, and rate of adverse drug events (ADE) attributable to anticonvulsant initiation, as adjudicated by expert review of electronic health records (EHR) of older adults. We identified a cohort of community dwelling Medicare beneficiaries with linked EHR (aged 65+, continuously enrolled with a large health system/until death between 2012 and 2014, n = 20 945) and drew a stratified EHR review sample (n = 1534). An expert reviewed all records to adjudicate anticonvulsant use, years of use, indication for use, and evidence of ADEs attributable to anticonvulsant initiation. After excluding patients with insufficient EHR data (n = 37; 2%), we reconstructed the cohort using inverse probability weights to resemble the original cohort of eligible beneficiaries (n = 20 380). Among incident users of a single anticonvulsant, we estimated the rate of ADEs and described the type and severity of ADEs. Overall, 12% (n = 2469) of eligible beneficiaries used at least one anticonvulsant in the 2012 to 2014 period (4% [n = 757] incident users, 8% [n = 1712] prevalent users). Incident users were most frequently prescribed gabapentin (n = 461/757, 61%), benzodiazepines (n = 122/757, 16%), and levetiracetam (n = 74/757, 10%); the most common indication was pain relief (n = 214; 28%) followed by epilepsy (n = 53; 7%). Among incident users, the overall ADE rate was 10/100 person-years (95% CI 4-20/100 person-years), of which 29% (n = 28/97) were life threatening (eg, somnolence). Most ADEs among incident monotherapy users were nervous system related (68%, n = 66/97). Many older adult community dwelling traditional Medicare beneficiaries had clinically significant ADEs likely attributable to the initiation of anticonvulsant therapy, which was begun for a range of indications.

Depression and polypharmacy are risk factors for activity limitation in type 2 diabetes.

Individuals with type 2 diabetes are at risk for deficits in instrumental activities of daily living (IADL: e.g., managing medication, preparing healthy meals). Understanding which demographic and health factors contribute to decreased frequency of IADL performance is especially important to prevent age-related functional decline in type 2 diabetes. This study examined the relationships among demographic and health variables and frequency of IADL performance in adults with type 2 diabetes. For this cross-sectional study, we collected health, demographic, and activity information via self-report and electronic health record review from safety-net primary care patients with type 2 diabetes (n = 93). We used regression models to determine which factors were associated with IADL performance in three subscales (domestic, leisure/work, outdoor) and the overall score. Depression was associated with decreased frequency of IADL performance for domestic, leisure/work, and outdoor activities. Each additional daily medication was associated with decreased frequency of domestic and outdoor IADL performance. Depression and taking more daily medication were predictors of decreased IADL performance for adults with type 2 diabetes. Our findings suggest regular screening for depression and polypharmacy is important in the primary care of diabetes; especially as these are potentially modifiable risk factors.

Patients with unexplained mismatch repair deficiency are interested in updated genetic testing

BackgroundIndividuals who have colorectal or endometrial cancers displaying loss of immunohistochemical staining of one or more mismatch repair proteins without an identifiable causative germline pathogenic variant have unexplained mismatch repair deficiency (UMMRD). Comprehensive germline genetic testing for Lynch syndrome (LS) includes sequencing and deletion/duplication analysis of MLH1, MSH2, MSH6, and PMS2, deletion analysis of EPCAM, and MSH2 inversion analysis. Updated genetic testing to include elements of comprehensive LS testing not previously completed could further clarify LS status in individuals with UMMRD, allowing for tailored screening guidelines for affected individuals and their family members. However, patient understanding of the potential impact of updated genetic testing for LS is unclear. This study aimed to evaluate the interest in and perceived impact of updated genetic testing among individuals with UMMRD at a tertiary academic center.MethodsA survey evaluating interest in and perceived impact of updated genetic testing was mailed to 98 potential participants. Electronic health record review was completed for all individuals meeting eligibility criteria. Thirty-one individuals responded to the survey.ResultsResults indicate this population is highly interested in updated genetic testing with the perceived impact being primarily for family members to have appropriate genetic testing and screening. Electronic health record review indicates that clinicians have an evolving understanding of causes of UMMRD, representing a potential change in assessment of cancer risk.ConclusionsUpdated risk assessment and genetic counseling with a discussion of the benefits and limitations of germline and somatic genetic testing, is essential as the understanding of UMMRD and genetic testing recommendations for this population evolve.

Trends in Low-Value Carotid Imaging in the Veterans Health Administration From 2007 to 2016

As part of the Choosing Wisely campaign, primary care, surgery, and neurology societies have identified carotid imaging ordered for screening, preoperative evaluation, and syncope as frequently low value. To determine the changes in overall and indication-specific rates of carotid imaging following Choosing Wisely recommendations. This serial cross-sectional study compared annual rates of carotid imaging before Choosing Wisely recommendations (ie, 2007 to 2012) and after (ie, 2013 to 2016) among adults receiving care in the Veterans Health Administration (VHA) national health system. Data analysis was performed from April 10, 2019, to November 27, 2019. Release of the Choosing Wisely recommendations. Annual rates of overall imaging, imaging ordered for stroke workup, imaging ordered for low-value indications (ie, screening owing to carotid bruit, preoperative evaluation, and syncope). Indications were identified using a text lexicon algorithm based on electronic health record review of a stratified random sample of 1000 free-text imaging orders. The subsequent performance of carotid procedures within 6 months after carotid imaging was assessed. Between 2007 and 2016, 809 071 carotid imaging examinations were identified (mean [SD] age of patients undergoing imaging, 69 [10] years; 776 632 [96%] men), of which 201 467 images (24.9%) were ordered for low-value indications (67 064 [8.2%] for carotid bruit, 25 032 [3.1%] for preoperative evaluation, and 109 400 [13.5%] for syncope), 257 369 (31.8%) for stroke workup, and 350 235 (43.3%) for other indications. Imaging for carotid bruits declined across the study period while there was no significant change in imaging for syncope or preoperative evaluation. Compared with the 6 years before, during the 4 years following Choosing Wisely recommendations, there was no change in the trend for syncope, a small decline in preoperative imaging (post-Choosing Wisely trend, -0.1 [95% CI, -0.1 to <-0.1] images per 10 000 veterans), and a continued but less steep decline in imaging for carotid bruits (post-Choosing Wisely trend, -0.3 [95% CI, -0.3 to -0.2] images per 10 000 veterans). During the study period, 17 689 carotid procedures were identified, of which 3232 (18.3%) were preceded by carotid imaging ordered for low-value indications. These findings suggest that Choosing Wisely recommendations were not associated with a meaningful change in low-value carotid imaging in a national integrated health system. To reduce low-value testing and utilization cascades, interventions targeting ordering clinicians are needed to augment the impact of public awareness campaigns.

Successful engagement in buprenorphine treatment among hospitalized patients with opioid use disorder and trauma

BackgroundThe opioid epidemic continues to cause significant morbidity and mortality. Although there are effective medications for opioid use disorder (OUD), a minority of patients receive these treatments. OUD is common among patients hospitalized for traumatic injury and hospitalization could be an opportunity to initiate medications and link to ongoing buprenorphine care. MethodsThis retrospective cohort study based on electronic health record review included patients who were: (1) hospitalized between January 1, 2018 and June 30, 2019, (2) age ≥18 years, (3) seen by an Addiction Medicine Consult Service, and (4) initiated on buprenorphine with plans for continuation post-discharge. Descriptive statistics identified differences between trauma and non-trauma groups and regression analysis identified predictors of 30 day buprenorphine follow up. ResultsOf 197 eligible patients, 60 (30.5 %) were hospitalized for traumatic injuries. Compared to non-trauma patients, trauma patients were younger, more likely to be employed, more likely to report using cannabis and tobacco, less likely to have recently injected drugs, and hospitalized longer. Among patients with follow-up data available (n = 147), 63.2 % of trauma patients were seen within 30 days, compared to 48.2 % of non-trauma patients (p = 0.16). There were no significant differences between the two groups with regards to urine drug test results or acute care utilization in the follow-up period. ConclusionsAmong hospitalized patients with OUD who initiate buprenorphine, those who were hospitalized for trauma were at least as likely to link to out-patient treatment. Trauma admissions represent an important opportunity for diagnosing and linking patients with OUD to buprenorphine treatment.

Validating a non-invasive, ALT-based non-alcoholic fatty liver phenotype in the million veteran program.

Background & aimsGiven ongoing challenges in non-invasive non-alcoholic liver disease (NAFLD) diagnosis, we sought to validate an ALT-based NAFLD phenotype using measures readily available in electronic health records (EHRs) and population-based studies by leveraging the clinical and genetic data in the Million Veteran Program (MVP), a multi-ethnic mega-biobank of US Veterans.MethodsMVP participants with alanine aminotransferases (ALT) >40 units/L for men and >30 units/L for women without other causes of liver disease were compared to controls with normal ALT. Genetic variants spanning eight NAFLD risk or ALT-associated loci (LYPLAL1, GCKR, HSD17B13, TRIB1, PPP1R3B, ERLIN1, TM6SF2, PNPLA3) were tested for NAFLD associations with sensitivity analyses adjusting for metabolic risk factors and alcohol consumption. A manual EHR review assessed performance characteristics of the NAFLD phenotype with imaging and biopsy data as gold standards. Genetic associations with advanced fibrosis were explored using FIB4, NAFLD Fibrosis Score and platelet counts.ResultsAmong 322,259 MVP participants, 19% met non-invasive criteria for NAFLD. Trans-ethnic meta-analysis replicated associations with previously reported genetic variants in all but LYPLAL1 and GCKR loci (P<6x10-3), without attenuation when adjusted for metabolic risk factors and alcohol consumption. At the previously reported LYPLAL1 locus, the established genetic variant did not appear to be associated with NAFLD, however the regional association plot showed a significant association with NAFLD 279kb downstream. In the EHR validation, the ALT-based NAFLD phenotype yielded a positive predictive value 0.89 and 0.84 for liver biopsy and abdominal imaging, respectively (inter-rater reliability (Cohen’s kappa = 0.98)). HSD17B13 and PNPLA3 loci were associated with advanced fibrosis.ConclusionsWe validate a simple, non-invasive ALT-based NAFLD phenotype using EHR data by leveraging previously established NAFLD risk-associated genetic polymorphisms.

A qualitative exploration of prodromal myocardial infarction fatigue experienced by women.

The purpose of this study was to explore adult women's unique and shared experiences of prodromal myocardial infarction fatigue. Fatigue is the most prevalent symptom experienced by women in the weeks and months before myocardial infarction. However, dimensions of this fatigue, such as timing, distress, intensity, quality, patterns and associated characteristics have not been established through studies of this symptom. A lack of understanding of the characteristics of myocardial infarction fatigue and the context in which it occurs makes clinical decision-making difficult. A qualitative, multiple case study guided by the Theory of Unpleasant Symptoms. Women were purposively enrolled from a large hospital in the Midwestern USA. Semi-structured, audio-recorded interviews were conducted during hospitalisation and at 2-3months postdischarge; women were also provided with a journal. A supplementary interview with family members and electronic health record review also assisted in data triangulation. Analysis was inductive and conducted within and across cases, using coding and categorisation, counting, clustering, visual displays of data and thematic development. The SRQR checklist was used in reporting the study. Ten women, with a median age of 60, participated. Fatigue was described primarily using the terms tiredness and lack of energy, though some women described generalised weakness and cognitive fog. This fatigue was unusual and a notable change from baseline. Many women described significant difficulties performing activities of daily living due to fatigue. The findings of this study will advance symptom science and an understanding of prodromal myocardial infarction fatigue. Future instrument development or selection of instruments for quantitative work will be aided by this study. This study provides a clearer picture of prodromal myocardial infarction fatigue experienced by women, aiding healthcare professionals in understanding and identifying this symptom.

PATIENT‐CENTERED RESEARCH

Research ObjectiveFor over a century, appendectomy has been the first‐line approach to managing acute appendicitis, but several European trials suggest antibiotics alone can be efficacious. While randomized controlled trials (RCTs) provide rigor for generating evidence, the acute nature of appendicitis, differences in risk and cost of interventions, and deeply held beliefs about treatment options pose challenges to feasibility for randomizing between surgical and medical treatments. To design a RCT, we previously assessed willingness to randomize to appendectomy or antibiotics through surveys administered through Amazon’s Mechanical Turk (MTurk)—an online crowdsourcing platform.Study DesignTo evaluate this engagement approach for study design, we assessed crowdsourced willingness to randomize for a hypothetical trial of surgery versus antibiotics for appendicitis compared with the true willingness to randomize among patients with acute appendicitis approached for enrollment in the Comparison of Antibiotic Drugs and Appendectomy (CODA) study. The first survey occurred in December 2014 and invited MTurk members to review information on appendicitis and the two treatment options, and then indicates willingness to participate in a theoretical study randomizing them to “surgery” or “antibiotics first.” Those unwilling to randomize could provide a reason. Participants were compensated $0.25. CODA participants were individuals &gt;18 years presenting to the emergency department with their first diagnosis of image‐confirmed appendicitis. Electronic health record review confirmed eligibility criteria. Patients willing to participate were randomized to appendectomy or 10 days of antibiotics. Patients declining participation were asked to provide a reason. We compared rates of willingness to randomize among MTurk and CODA participants and qualitatively analyzed reasons for declining randomization and treatment preferences.Population StudiedMTurk participants represented a sample of US‐based individuals registered on MTurk in December 2014. CODA participants included eligible individuals approached for study consent between July 2016 and May 2019.Principal FindingsAmong 557 individuals surveyed on MTurk, 253 (45%) reported willingness to randomize. Among those unwilling to randomize, 80 (26%) preferred appendectomy, 42 (14%) preferred antibiotics, and 182 (60%) indicated other reasons (e.g., lack of interest, lack of time, and desire for autonomy). Of the 3,829 eligible CODA participants, 1,207 (32%) consented for the RCT. Among eligible patients unwilling to randomize, 1,777 (75%) preferred appendectomy, 471 (20%) preferred antibiotics, and 134 (5.6%) indicated other reasons for not randomizing.ConclusionsMTurk provided a unique platform to obtain input on the feasibility for a trial comparing appendicitis treatments. While MTurk overestimated the willingness to randomize, the results informed study design, ultimately resulting in successful recruitment of trial participants. Assuming stated and revealed preferences may differ, we discounted the rate reported in MTurk and projected a randomization rate of 30% for CODA, which reflected actual recruitment outcomes during study conduct.Implications for Policy or PracticeExpanded outreach to populations of interest during study development is an important step in understanding the feasibility of study conduct. Our experience suggests crowdsourcing offers valuable information when designing RCTs and may be an efficient adjunct to conventional study development. Using exclusion criteria that mirrors the targeted study population may further improve insight to strengthen study design including selection of outcomes.Primary Funding SourcePatient‐Centered Outcomes Research Institute.

Identification of Undetected Monogenic Cardiovascular Disorders

BackgroundMonogenic diseases are individually rare but collectively common, and are likely underdiagnosed. ObjectivesThe purpose of this study was to estimate the prevalence of monogenic cardiovascular diseases (MCVDs) and potentially missed diagnoses in a cardiovascular cohort. MethodsExomes from 8,574 individuals referred for cardiac catheterization were analyzed. Pathogenic/likely pathogenic (P/LP) variants associated with MCVD (cardiomyopathies, arrhythmias, connective tissue disorders, and familial hypercholesterolemia were identified. Electronic health records (EHRs) were reviewed for individuals harboring P/LP variants who were predicted to develop disease (G+). G+ individuals who did not have a documented relevant diagnosis were classified into groups of whether they may represent missed diagnoses (unknown, unlikely, possible, probable, or definite) based on relevant diagnostic criteria/features for that disease. ResultsIn total, 159 P/LP variants were identified; 2,361 individuals harbored at least 1 P/LP variant, of whom 389 G+ individuals (4.5% of total cohort) were predicted to have at least 1 MCVD. EHR review of 342 G+ individuals predicted to have 1 MCVD with sufficient EHR data revealed that 52 had been given the relevant clinical diagnosis. The remaining 290 individuals were classified as potentially having an MCVD as follows: 193 unlikely (66.6%), 50 possible (17.2%), 30 probable (10.3%), and 17 definite (5.9%). Grouping possible, probable, definite, and known diagnoses, 149 were considered to have an MCVD. Novel MCVD pathogenic variants were identified in 16 individuals. ConclusionsOverall, 149 individuals (1.7% of cohort) had MCVDs, but only 35% were diagnosed. These patients represents a “missed opportunity,” which could be addressed by greater use of genetic testing of patients seen by cardiologists.

Colonoscopy adverse events: are we getting the full picture?

Introduction Colonoscopy adverse events (AEs) are commonly underreported and standardised reporting is rarely used. We aimed to investigate AEs associated with colonoscopy in a real world setting, using the American Society of Gastrointestinal Endoscopy (ASGE) lexicon. Methods This retrospective cohort study of AEs related to outpatient colonoscopies performed in the North Denmark Region from 2015 to 2018 identified AEs from readmission within eight days or death within 30 days of colonoscopy. AEs were investigated in electronic health records and categorised, attributed and graded according to the ASGE lexicon. Results Of 49,445 colonoscopies performed, 1141 were potentially associated with AEs (23.07‰). Electronic health record review left 489 AEs attributed to colonoscopy (9.9‰); categorised as cardiovascular (0.65‰), pulmonary (0.36‰), thromboembolic (0.10‰), instrumental incl. perforations (0.99‰), bleeding (3.07‰), infection (0.87‰), drug reactions (0.04‰), pain (2.00‰), integument (damage to skin/bones) (0.34‰) and other (1.62‰) AEs. Ten (0.20‰) AEs were fatal, but only one was procedure related (perforation). All shearing force perforations occurred in the sigmoid colon. Most polypectomy perforations occurred in the caecum (60%). Conclusions Colonoscopy carries important procedure and non-procedure related risks. Non-procedure related AEs are likely underreported. Better attention to patients with pre-existing diseases and further colonoscopist training may lower AE rates. A standardised colonoscopy AE reporting system is warranted.

Accuracy of ICD-10-CM claims-based definitions for epilepsy and seizure type

ObjectiveTo evaluate the accuracy of ICD-10-CM claims-based definitions for epilepsy and classifying seizure types in the outpatient setting. MethodsWe reviewed electronic health records (EHR) for a cohort of adults aged 18+ years seen by six neurologists who had an outpatient visit at a level 4 epilepsy center between 01/2019−09/2019. The neurologists used a standardized documentation template to capture the diagnosis of epilepsy (yes/no/unsure), seizure type (focal/generalized/unknown), and seizure frequency in the EHR. Using linked ICD-10-CM codes assigned by the provider, we assessed the accuracy of claims-based definitions for epilepsy, focal seizure type, and generalized seizure type against the reference-standard EHR documentation by estimating sensitivity (Sn), specificity (Sp), positive predictive value (PPV), and negative predictive value (NPV). ResultsThere were 673 eligible outpatient encounters. After review of EHRs for standardized documentation, an analytic sample consisted of 520 encounters representing 402 unique patients. In the EHR documentation, 93.5 % (n = 486/520) of encounters were with patients with a diagnosis of epilepsy. Of those, 66.0 % (n = 321/486) had ≥1 focal seizure, 41.6 % (n = 202/486) had ≥1 generalized seizure, and 7% (n = 34/486) had ≥1 unknown seizure. An ICD-10-CM definition for epilepsy (i.e., ICD-10 G40.X) achieved Sn = 84.4 % (95 % CI 80.8−87.5%), Sp = 79.4 % (95 % CI 62.1−91.3%), PPV = 98.3 % (95 % CI 96.6−99.3%), and NPV = 26.2 % (95 % CI 18.0−35.8%). The classification of focal vs generalized/unknown seizures achieved Sn = 69.8 % (95 % CI 64.4−74.8%), Sp = 79.4 % (95 % CI 72.4−85.3%), PPV = 86.8 % (95 % CI 82.1−90.7%), and NPV = 57.5 % (95 % CI 50.8−64.0%). ConclusionsClaims-based definitions using groups of ICD-10-CM codes assigned by neurologists in routine outpatient clinic visits at a level 4 epilepsy center performed well in discriminating between patients with and without a diagnosis of epilepsy and between seizure types.

Intensive Multidisciplinary Intervention for Young Children with Feeding Tube Dependence and Chronic Food Refusal: An Electronic Health Record Review

To assess characteristics and outcomes of young children receiving intensive multidisciplinary intervention for chronic food refusal and feeding tube dependence. We conducted a retrospective study of consecutive patients (birth to age 21years) admitted to an intensive multidisciplinary intervention program over a 5-year period (June 2014-June 2019). Inclusion criteria required dependence on enteral feeding, inadequate oral intake, and medical stability to permit tube weaning. Treatment combined behavioral intervention and parent training with nutrition therapy, oral-motor therapy, and medical oversight. Data extraction followed a systematic protocol; outcomes included anthropometric measures, changes in oral intake, and percentage of patients fully weaned from tube feeding. Of 229 patients admitted during the 5-year period, 83 met the entry criteria; 81 completed intervention (98%) and provided outcome data (46 males, 35 females; age range, 10-230months). All patients had complex medical, behavioral, and/or developmental histories with longstanding feeding problems (median duration, 33months). At discharge, oral intake improved by 70.5%, and 27 patients (33%) completely weaned from tube feeding. Weight gain (mean, 0.39±1kg) was observed. Treatment gains continued following discharge, with 58 patients (72%) weaned from tube feeding at follow-up. Our findings support the effectiveness of our intensive multidisciplinary intervention model in promoting oral intake and reducing dependence on tube feeding in young children with chronic food refusal. Further research on the generalizability of this intensive multidisciplinary intervention approach to other specialized treatment settings and/or feeding/eating disorder subtypes is warranted.

Risk factors for pediatric cerebral sinovenous thrombosis: A case-control study with case validation

IntroductionCerebral sinovenous thrombosis (CSVT) represents the second most common type of venous thromboembolism (VTE) in children. Current literature includes limited evidence on risk factors for CSVT, particularly in the pediatric population. We sought to determine risk factors for CSVT in pediatric patients through a single-institutional case-control study. In addition, we evaluated thrombophilias, treatments and outcomes in CSVT among cases. MethodsA case-control study was performed at Johns Hopkins All Children's Hospital on patients admitted from March 31, 2006 through April 1, 2018. Cases were identified using diagnostic codes and confirmed based on electronic health record (EHR) and neuroimaging review. Controls were matched in a 2:1 fashion accounting for the month and year of admission. ResultsA total of 60 CSVT cases and 120 controls were identified. Median (range) age was 4.8 years (0–21.3 years) for cases and 5.6 years (0–20.0 years) for controls. Factors putatively associated with CSVT in unadjusted analyses were: corticosteroid use, presence of a central venous catheter, mechanical ventilation, systemic infection, head/neck infection, head/neck trauma, and chronic inflammatory disease. In the multivariable model, head/neck infection (OR: 13.8, 95% CI: 4.87–38.7; P < 0.01), head/neck trauma (OR: 12.7, 95% CI: 2.88–56.2; P < 0.01), and mechanical ventilation (OR: 9.32, 95% CI: 2.35–36.9; P = 0.01) remained independent, statistically-significant risk factors. 61% of patients were subacutely treated with anticoagulants and of those, only two developed relevant bleeding after initiation of therapy. ConclusionsThis single-institutional case-control study reveals that head/neck infection, head/neck trauma, and mechanical ventilation are independent risk factors for pediatric CSVT. These findings will be further investigated via a cooperative registry of pediatric hospital-acquired VTE, by which a risk model for pediatric CSVT will be developed and validated, in order to inform future preventive strategies in at-risk pediatric patients.