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Defining Early Recurrence of Hilar Cholangiocarcinoma After Curative-intent Surgery: A Multi-institutional Study from the US Extrahepatic Biliary Malignancy Consortium.
Zhang XF, Beal EW, Chakedis J, Chen Q, Lv Y, Ethun CG, Salem A, Weber SM, Tran T, Poultsides G, Son AY, Hatzaras I, Jin L, Fields RC, Buettner S, Scoggins C, Martin RCG, Isom CA, Idrees K, Mogal HD, Shen P, Maithel SK, Schmidt CR, Pawlik TM
(2018) World J Surg 42: 2919-2929
MeSH Terms: Adult, Aged, Bile Duct Neoplasms, Biliary Tract Neoplasms, Cholangiocarcinoma, Data Collection, Female, Humans, Klatskin Tumor, Lymphatic Metastasis, Male, Middle Aged, Multivariate Analysis, Neoplasm Recurrence, Local, Prognosis, Risk Factors, Time Factors, Treatment Outcome, United States
Show Abstract · Added April 10, 2018
BACKGROUND - Time to tumor recurrence may be associated with outcomes following resection of hepatobiliary cancers. The objective of the current study was to investigate risk factors and prognosis among patients with early versus late recurrence of hilar cholangiocarcinoma (HCCA) after curative-intent resection.
METHODS - A total of 225 patients who underwent curative-intent resection for HCCA were identified from 10 academic centers in the USA. Data on clinicopathologic characteristics, pre-, intra-, and postoperative details and overall survival (OS) were analyzed. The slope of the curves identified by linear regression was used to categorize recurrences as early versus late.
RESULTS - With a median follow-up of 18.0 months, 99 (44.0%) patients experienced a tumor recurrence. According to the slope of the curves identified by linear regression, the functions of the two straight lines were y = -0.465x + 16.99 and y = -0.12x + 7.16. The intercept value of the two lines was 28.5 months, and therefore, 30 months (2.5 years) was defined as the cutoff to differentiate early from late recurrence. Among 99 patients who experienced recurrence, the majority (n = 80, 80.8%) occurred within the first 2.5 years (early recurrence), while 19.2% of recurrences occurred beyond 2.5 years (late recurrence). Early recurrence was more likely present as distant disease (75.1% vs. 31.6%, p = 0.001) and was associated with a worse OS (Median OS, early 21.5 vs. late 50.4 months, p < 0.001). On multivariable analysis, poor tumor differentiation (HR 10.3, p = 0.021), microvascular invasion (HR 3.3, p = 0.037), perineural invasion (HR 3.9, p = 0.029), lymph node metastases (HR 5.0, p = 0.004), and microscopic positive margin (HR 3.5, p = 0.046) were independent risk factors associated with early recurrence.
CONCLUSIONS - Early recurrence of HCCA after curative resection was common (~35.6%). Early recurrence was strongly associated with aggressive tumor characteristics, increased risk of distant metastatic recurrence and a worse long-term survival.
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Validation of maternal recall of early pregnancy medication exposure using prospective diary data.
Sundermann AC, Hartmann KE, Jones SH, Torstenson ES, Velez Edwards DR
(2017) Ann Epidemiol 27: 135-139.e2
MeSH Terms: Adolescent, Adult, Anti-Inflammatory Agents, Non-Steroidal, Data Collection, Female, Humans, Interviews as Topic, Maternal Exposure, Mental Recall, Middle Aged, Nonprescription Drugs, North Carolina, Pregnancy, Pregnancy Complications, Pregnancy Trimester, First, Prescription Drugs, Prospective Studies, Sensitivity and Specificity, Tennessee, Texas, Young Adult
Show Abstract · Added February 21, 2019
PURPOSE - Data about maternal recall accuracy for classifying early pregnancy medication exposure are meager. Nonetheless, studies often rely on recall to evaluate potential impact of pharmaceuticals on the developing fetus.
METHODS - Right from the Start is a community-based pregnancy cohort that enrolled women from North Carolina, Tennessee, and Texas. A subset of 318 women participated in daily medication diaries initiated before conception (2006-2012). We examined nonsteroidal anti-inflammatory drugs (NSAIDs) as an example of a drug type that is difficult to study due to its intermittent and primarily over-the-counter use as well as its incomplete documentation in medical and pharmaceutical records. Selective serotonin reuptake inhibitors (SSRI) were assessed as a prescription medication comparator. Maternal recall of NSAID and SSRI use in early pregnancy was examined by comparing diary data (gold standard) to first-trimester interview.
RESULTS - Sensitivity and specificity for recall of NSAID exposure were 78.6% and 62.3%, respectively (kappa statistic: 0.41), with 72.3% agreement for exposure classification. Sensitivity and specificity for recall of SSRI exposure were 77.8% and 99.0%, respectively (kappa statistic: 0.79), with 97.8% agreement.
CONCLUSIONS - Our findings suggest the validity of maternal recall varies with medication type and prospective data collection should be prioritized when studying early pregnancy drug exposures.
Copyright © 2016 Elsevier Inc. All rights reserved.
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Rationale and Design of the Registry for Stones of the Kidney and Ureter (ReSKU): A Prospective Observational Registry to Study the Natural History of Urolithiasis Patients.
Chang HC, Tzou DT, Usawachintachit M, Duty BD, Hsi RS, Harper JD, Sorensen MD, Stoller ML, Sur RL, Chi T
(2016) J Endourol 30: 1332-1338
MeSH Terms: Automation, Biomedical Research, Canada, China, Data Collection, Databases, Factual, Female, Humans, International Cooperation, Japan, Kidney, Kidney Calculi, Male, Middle Aged, Outcome Assessment (Health Care), Prospective Studies, Registries, United States, Ureter, Ureteral Calculi, Ureterolithiasis, Urolithiasis
Show Abstract · Added January 16, 2018
OBJECTIVES - Registry-based clinical research in nephrolithiasis is critical to advancing quality in urinary stone disease management and ultimately reducing stone recurrence. A need exists to develop Health Insurance Portability and Accountability Act (HIPAA)-compliant registries that comprise integrated electronic health record (EHR) data using prospectively defined variables. An EHR-based standardized patient database-the Registry for Stones of the Kidney and Ureter (ReSKU™)-was developed, and herein we describe our implementation outcomes.
MATERIALS AND METHODS - Interviews with academic and community endourologists in the United States, Canada, China, and Japan identified demographic, intraoperative, and perioperative variables to populate our registry. Variables were incorporated into a HIPAA-compliant Research Electronic Data Capture database linked to text prompts and registration data within the Epic EHR platform. Specific data collection instruments supporting New patient, Surgery, Postoperative, and Follow-up clinical encounters were created within Epic to facilitate automated data extraction into ReSKU.
RESULTS - The number of variables within each instrument includes the following: New patient-60, Surgery-80, Postoperative-64, and Follow-up-64. With manual data entry, the mean times to complete each of the clinic-based instruments were (minutes) as follows: New patient-12.06 ± 2.30, Postoperative-7.18 ± 1.02, and Follow-up-8.10 ± 0.58. These times were significantly reduced with the use of ReSKU structured clinic note templates to the following: New patient-4.09 ± 1.73, Postoperative-1.41 ± 0.41, and Follow-up-0.79 ± 0.38. With automated data extraction from Epic, manual entry is obviated.
CONCLUSIONS - ReSKU is a longitudinal prospective nephrolithiasis registry that integrates EHR data, lowering the barriers to performing high quality clinical research and quality outcome assessments in urinary stone disease.
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22 MeSH Terms
A Scalable Framework to Detect Personal Health Mentions on Twitter.
Yin Z, Fabbri D, Rosenbloom ST, Malin B
(2015) J Med Internet Res 17: e138
MeSH Terms: Data Collection, Disclosure, Health Status, Humans, Internet, Self Disclosure, Social Media
Show Abstract · Added January 26, 2016
BACKGROUND - Biomedical research has traditionally been conducted via surveys and the analysis of medical records. However, these resources are limited in their content, such that non-traditional domains (eg, online forums and social media) have an opportunity to supplement the view of an individual's health.
OBJECTIVE - The objective of this study was to develop a scalable framework to detect personal health status mentions on Twitter and assess the extent to which such information is disclosed.
METHODS - We collected more than 250 million tweets via the Twitter streaming API over a 2-month period in 2014. The corpus was filtered down to approximately 250,000 tweets, stratified across 34 high-impact health issues, based on guidance from the Medical Expenditure Panel Survey. We created a labeled corpus of several thousand tweets via a survey, administered over Amazon Mechanical Turk, that documents when terms correspond to mentions of personal health issues or an alternative (eg, a metaphor). We engineered a scalable classifier for personal health mentions via feature selection and assessed its potential over the health issues. We further investigated the utility of the tweets by determining the extent to which Twitter users disclose personal health status.
RESULTS - Our investigation yielded several notable findings. First, we find that tweets from a small subset of the health issues can train a scalable classifier to detect health mentions. Specifically, training on 2000 tweets from four health issues (cancer, depression, hypertension, and leukemia) yielded a classifier with precision of 0.77 on all 34 health issues. Second, Twitter users disclosed personal health status for all health issues. Notably, personal health status was disclosed over 50% of the time for 11 out of 34 (33%) investigated health issues. Third, the disclosure rate was dependent on the health issue in a statistically significant manner (P<.001). For instance, more than 80% of the tweets about migraines (83/100) and allergies (85/100) communicated personal health status, while only around 10% of the tweets about obesity (13/100) and heart attack (12/100) did so. Fourth, the likelihood that people disclose their own versus other people's health status was dependent on health issue in a statistically significant manner as well (P<.001). For example, 69% (69/100) of the insomnia tweets disclosed the author's status, while only 1% (1/100) disclosed another person's status. By contrast, 1% (1/100) of the Down syndrome tweets disclosed the author's status, while 21% (21/100) disclosed another person's status.
CONCLUSIONS - It is possible to automatically detect personal health status mentions on Twitter in a scalable manner. These mentions correspond to the health issues of the Twitter users themselves, but also other individuals. Though this study did not investigate the veracity of such statements, we anticipate such information may be useful in supplementing traditional health-related sources for research purposes.
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Assessing data intrusion threats.
Barth-Jones D, El Emam K, Bambauer J, Cavoukian A, Malin B
(2015) Science 348: 194-5
MeSH Terms: Commerce, Data Collection, Female, Humans, Information Dissemination, Male, Privacy
Added April 10, 2018
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Anonymising and sharing individual patient data.
El Emam K, Rodgers S, Malin B
(2015) BMJ 350: h1139
MeSH Terms: Biomedical Research, Canada, Confidentiality, Data Collection, European Union, Humans, Information Dissemination, Medical Records, United States
Added April 10, 2018
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MeSH Terms
Prevalence and characteristics of medication sharing behavior in a pediatric Medicaid population with asthma.
Valet RS, Gebretsadik T, Minton PA, Woodward KB, Wu AC, Hartert TV, Larkin EK
(2015) Ann Allergy Asthma Immunol 114: 151-3
MeSH Terms: Anti-Asthmatic Agents, Asthma, Child, Child, Preschool, Data Collection, Female, Humans, Male, Medicaid, Prescription Drug Misuse, Prevalence, United States
Added January 20, 2015
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Sources of health information among rural women in Western Kentucky.
Simmons LA, Wu Q, Yang N, Bush HM, Crofford LJ
(2015) Public Health Nurs 32: 3-14
MeSH Terms: Adult, Aged, Confidentiality, Consumer Health Information, Data Collection, Depression, Female, Humans, Information Seeking Behavior, Internet, Kentucky, Middle Aged, Professional-Patient Relations, Public Health Nursing, Rural Population, Stereotyping
Show Abstract · Added January 21, 2015
OBJECTIVE - To identify sources of general and mental health information for rural women to inform the development of public health nursing interventions that consider preferences for obtaining information.
DESIGN AND SAMPLE - One thousand women (mean age = 57 years; 96.9% White) living in primarily nonmetropolitan areas of Western Kentucky participated via a random-digit-dial survey.
MEASURES - Data were collected on demographics, sources of health information, depression, and stigma.
RESULTS - Most participants preferred anonymous versus interpersonal sources for both general (68.1%) and mental health (69.4%) information. All participants reported at least one source of general health information, but 20.8% indicated not seeking or not knowing where to seek mental health information. The Internet was the most preferred anonymous source. Few women cited health professionals as the primary information source for general (11.4%) or mental (9.9%) health. Public stigma was associated with preferring anonymous sources and not seeking information.
CONCLUSIONS - Public health nurses should understand the high utilization of anonymous sources, particularly for mental health information, and focus efforts on helping individuals to navigate resources to ensure they obtain accurate information about symptoms, effective treatments, and obtaining care. Reducing stigma should remain a central focus of prevention and education in rural areas.
© 2014 Wiley Periodicals, Inc.
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16 MeSH Terms
Discordance between self-report and genetic confirmation of sickle cell disease status in African-American adults.
Bean CJ, Hooper WC, Ellingsen D, DeBaun MR, Sonderman J, Blot WJ
(2014) Public Health Genomics 17: 169-72
MeSH Terms: Adult, African Americans, Aged, Anemia, Sickle Cell, Cohort Studies, Data Collection, Female, Genetic Testing, Health Education, Health Knowledge, Attitudes, Practice, Hemoglobin C, Hemoglobin, Sickle, Heterozygote, Humans, Male, Middle Aged, Self Report, Sickle Cell Trait, Southeastern United States, beta-Globins
Show Abstract · Added October 7, 2014
BACKGROUND - Sickle cell disease (SCD) is an autosomal recessive genetic disorder, with persons heterozygous for the mutation said to have the sickle cell trait (SCT). Serious adverse effects are mainly limited to those with SCD, but the distinction between disease and trait is not always clear to the general population. We sought to determine the accuracy of self-reported SCD when compared to genetic confirmation.
METHODS - From stratified random samples of Southern Community Cohort Study participants, we sequenced the β- globin gene in 51 individuals reporting SCD and 75 individuals reporting no SCD.
RESULTS - The median age of the group selected was 53 years (range 40-69) with 29% male. Only 5.9% of the 51 individuals reporting SCD were confirmed by sequencing, with the remaining 62.7% having SCT, 5.9% having hemoglobin C trait, and 25.5% having neither SCD nor trait. Sequencing results of the 75 individuals reporting no SCD by contrast were 100% concordant with self-report.
CONCLUSIONS - Misreporting of SCD is common in an older adult population, with most persons reporting SCD in this study being carriers of the trait and a sizeable minority completely unaffected. The results from this pilot survey support the need for increased efforts to raise community awareness and knowledge of SCD.
© 2014 S. Karger AG, Basel.
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20 MeSH Terms
Investigator feedback about the 2005 NIH diagnostic and scoring criteria for chronic GVHD.
Inamoto Y, Jagasia M, Wood WA, Pidala J, Palmer J, Khera N, Weisdorf D, Carpenter PA, Flowers ME, Jacobsohn D, Martin PJ, Lee SJ, Pavletic SZ, Chronic GVHD Consortium
(2014) Bone Marrow Transplant 49: 532-8
MeSH Terms: Chronic Disease, Data Collection, Graft vs Host Disease, Hematopoietic Stem Cell Transplantation, Humans, Severity of Illness Index, Surveys and Questionnaires, Transplantation Conditioning, Transplantation, Homologous, United States
Show Abstract · Added March 20, 2014
The 2005 National Institutes of Health (NIH) consensus criteria for chronic GVHD have set standards for reporting. Many questions, however, have arisen regarding their implementation and utilization. To identify perceived areas of controversy, we conducted an international survey on diagnosis and scoring of chronic GVHD. Agreement was observed for 50-83% of the 72 questions in 7 topic areas. There was agreement on the need for modifying criteria in six situations: two or more distinctive manifestations should be enough to diagnose chronic GVHD; symptoms that are not due to chronic GVHD should be scored differently; active disease and fixed deficits should be distinguished; a minimum threshold body surface area of hidebound skin involvement should be required for a skin score of 3; asymptomatic oral lichenoid changes should be considered a score 1; and lung biopsy should be unnecessary to diagnose chronic GVHD in a patient with bronchiolitis obliterans as the only manifestation. The survey also identified 26 points of controversy. Whenever possible, studies should be conducted to confirm the appropriateness of any revisions. In cases where data are not available, clarification of the NIH recommendations by consensus is necessary. This survey should inform future research in the field and revisions of the current consensus criteria.
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10 MeSH Terms