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1.
J Biomed Inform ; 157: 104687, 2024 Jul 08.
Artigo em Inglês | MEDLINE | ID: mdl-38986921

RESUMO

OBJECTIVE: The ability to apply results from a study to a broader population remains a primary objective in translational science. Distinct from intrinsic elements of scientific rigor, the extrinsic concept of generalization requires there be alignment between a study cohort and population in which results are expected to be applied. Widespread efforts have been made to quantify representativeness of study cohorts. These techniques, however, often consider the study and target cohorts as monolithic collections that can be directly compared. Overlooking known impacts to health from socio-demographic and environmental factors tied to individual's geographical location, and potentially obfuscating misalignment in underrepresented population subgroups. This manuscript introduces several measures to account for geographic information in the assessment of cohort representation. METHODS: Metrics were defined across two themes: First, measures of recruitment, to assess if a study cohort is drawn at an expected rate and in an expected geographical pattern with respect to individuals in a reference cohort. Second, measures of individual characteristics, to assess if the individuals in the study cohort accurately reflect the sociodemographic, clinical, and geographic diversity observed across a reference cohort while accounting for the geospatial proximity of individuals. RESULTS: As an empirical demonstration, methods are applied to an active clinical study examining asthma in Black/African American patients at a US Midwestern pediatric hospital. Results illustrate how areas of over- and under-recruitment can be identified and contextualized in light of study recruitment patterns at an individual-level, highlighting the ability to identify a subset of features for which the study cohort closely resembled the broader population. In addition they provide an opportunity to dive deeper into misalignments, to identify study cohort members that are in some way distinct from the communities for which they are expected to represent. CONCLUSION: Together, these metrics provide a comprehensive spatial assessment of a study cohort with respect to a broader target population. Such an approach offers researchers a toolset by which to target expected generalization of results derived from a given study.

2.
Genet Med ; 25(9): 100895, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37194653

RESUMO

PURPOSE: Persistent inequities in genomic medicine and research contribute to health disparities. This analysis uses a context-specific and equity-focused strategy to evaluate enrollment patterns for Genomic Answers for Kids (GA4K), a large, metropolitan-wide genomic study on children. METHODS: Electronic health records for 2247 GA4K study participants were used to evaluate the distribution of individuals by demographics (race, ethnicity, and payor type) and location (residential address). Addresses were geocoded to produce point density and 3-digit zip code maps showing local and regional enrollment patterns. Health system reports and census data were used to compare participant characteristics with reference populations at different spatial scales. RESULTS: Racial and ethnic minoritized and populations with low-income were underrepresented in the GA4K study cohort. Geographic variation demonstrates inequity in enrollment and participation among children from historically segregated and socially disadvantaged communities. CONCLUSION: Our findings illustrate inequity in enrollment related to both GA4K study design and structural inequalities, which we suspect may exist for similar US-based studies. Our methods provide a scalable framework for continually evaluating and improving study design to ensure equitable participation in and benefits from genomic research and medicine. The use of high-resolution, place-based data represents a novel and practical means of identifying and characterizing inequities and targeting community engagement.


Assuntos
Etnicidade , Medicina , Criança , Humanos , Genômica , Projetos de Pesquisa
3.
Vasc Med ; 27(4): 350-357, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35603755

RESUMO

Introduction: Patients with critical limb ischemia (CLI) can undergo endovascular peripheral vascular intervention (PVI) to restore blood flow and decrease risk of amputation. As a potential indicator of quality for CLI care, we sought to describe 30-day major amputation rates following PVI. We also examined rate variability, and patient-level and site-level factors predicting amputations, using a national electronic health record (EHR) database. Methods: Using the Cerner Health Facts de-identified EHR database, patients with CLI diagnosis codes undergoing PVI were identified. The rate of amputation within 30 days of PVI was calculated. Risk ratios predicting amputation were derived using a mixed effects Poisson regression model adjusting for 16 patient and clinical factors. Median risk ratios (MRRs) were calculated to quantify site-level variability in amputations. Results: A total of 20,204 PVI procedures for CLI from 179 healthcare sites were identified. Mean age at procedure was 69.0 ± 12.6 years, 58.0% were male, and 29.6% were persons of color. Amputation within 30 days of PVI occurred after 570 (2.8%) procedures. Malnutrition, previous amputation, diabetes, and being of Black race were predictors of amputation. Amputation rates across sites ranged from 0.0% to 10.0%. The unadjusted MRR was 1.40 (95% CI 1.35-1.46), which was attenuated after adjusting for patient-level factors (MRR 1.30, 95% CI 1.26-1.34) and site characteristics (MRR 1.11, 95% CI 1.09-1.13). Conclusions: Among PVI procedures for CLI treatment, 30-day amputation rates varied across institutions. Although patient-level factors explained some variability, site-level factors explained most variation in the rates of these outcomes.


Assuntos
Procedimentos Endovasculares , Doença Arterial Periférica , Amputação Cirúrgica , Isquemia Crônica Crítica de Membro , Estado Terminal , Procedimentos Endovasculares/efeitos adversos , Feminino , Humanos , Isquemia/diagnóstico , Isquemia/cirurgia , Salvamento de Membro , Masculino , Doença Arterial Periférica/diagnóstico , Doença Arterial Periférica/cirurgia , Estudos Retrospectivos , Fatores de Risco , Fatores de Tempo , Resultado do Tratamento
4.
J Minim Invasive Gynecol ; 29(11): 1268-1277, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36130704

RESUMO

STUDY OBJECTIVE: To assess whether complications incurred during hysterectomy for the treatment of endometriosis differ among racial-ethnic groups. DESIGN: Retrospective cohort study. SETTING: American College of Surgeons National Surgical Quality Improvement Program database from 2014 to 2019. This database is a robust, comprehensive, multi-institutional database with nearly 700 participating hospitals. PATIENTS: Patients with a diagnosis of endometriosis or with an endometriosis-associated symptom as the primary indication for surgery and surgical intraoperative documentation of endometriosis. INTERVENTIONS: Compare perioperative complications based on patient race and ethnicity. MEASUREMENTS AND MAIN RESULTS: A total of 5639 patients underwent hysterectomy for endometriosis; of these, 4368 were White patients (77.5%), 528 Black patients (9.4%), 491 Hispanic patients (8.7%), 252 Asian patients (4.5%). There was no association between location of endometriosis and patient race and ethnicity. However, White patients had highest rate, and Asian patients had the lowest rate of laparoscopic hysterectomy, 85.3% vs 69.8%, respectively (p <.01). In addition, there were differences in concomitant procedures performed at time of hysterectomy based on race and ethnicity, with White patients having the highest rates of adnexal/peritoneal surgery at 12.5% (p <.01) compared with patients of the other racial and ethnic groups. Asian patients had the highest rate of ureteral surgery at 6.8% (p <.01) and highest rate of intestinal surgery at 16.3% (p <.01) compared with patients of other racial and ethnic groups. There was no association of rates of concomitant bladder surgery, appendectomy, or rectal surgery with patient race and ethnicity. Black patients had the highest rate of minor complications at 13.5% (p <.01) and the highest rate of major complications at 6.6% (p <.01) compared with patients of other racial and ethnic groups. After multivariable analysis, Black patients still had increased odds of having a major complication compared with patients of other racial and ethnic groups even after controlling for patient characteristics and perioperative factors such as endometriosis lesion location, surgical approach, and concomitant procedures (odds ratio 1.64; 95% confidence interval, 1.10-2.45). CONCLUSION: Endometriosis lesion location did not differ with patient race and ethnicity. However, patient race and ethnicity did have an impact on the surgical approach and the concomitant surgical procedures performed at time of hysterectomy. Black patients had the highest odds of major complications.


Assuntos
Endometriose , Etnicidade , Feminino , Humanos , Endometriose/cirurgia , Endometriose/etiologia , Estudos Retrospectivos , Histerectomia/métodos , Grupos Raciais
5.
J Minim Invasive Gynecol ; 29(5): 683-690, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35085838

RESUMO

STUDY OBJECTIVE: Evaluate inter-rater and intrarater reliability of a novel scoring tool for surgical complexity assessment of endoscopic hysterectomy. DESIGN: Validation study. SETTING: Academic medical center. PARTICIPANTS: Total of 11 academic obstetrician-gynecologists with varying years of postresidency training, clinical practice, and surgical volumes. INTERVENTIONS: Application of a novel scoring tool to evaluate surgical complexity of 150 sets of images taken in a standardized fashion before surgical intervention (global pelvis, anterior cul-de-sac, posterior cul-de-sac, right adnexa, left adnexa). Using only these images, raters were asked to assess uterine size, number, and location of myomas, adnexal and uterine mobility, need for ureterolysis, and presence of endometriosis or adhesions in relevant locations. Surgical complexity was staged on a scale of 1 to 4 (low to high complexity). MEASUREMENTS AND MAIN RESULTS: Number of postresidency years in practice for participating surgeons ranged from 2 to 15, with an average of 8 years. A total of 8 obstetrician-gynecologists (72.7%) had completed a fellowship in minimally invasive gynecologic surgery. Six (54.6%) reported an annual volume of >50 hysterectomies. Raters reported that 95.4% of the images were satisfactory for assessment. Of the 150 sets of images, most were found to be stage 1 to 2 complexity (stage 1: 23.8%, stage 2: 41.6%, stage 3: 32.8%, stage 4: 1.8%). The level of inter-rater agreement regarding stage 1 to 2 vs 3 to 4 complexity was moderate (κ = 0.49; 95% confidence interval [CI], 0.42-0.56). Moderate inter-rater agreement was also found between surgeon raters with an annual hysterectomy volume >50 (κ = 0.49; 95% CI, 0.40-0.57) as well as between surgeon raters with fellowship experience (κ = 0.50; 95% CI, 0.42-0.58). Intrarater agreement averaged 80.2% among all raters and also achieved moderate agreement (mean weighted κ = 0.53; range, 0.38-0.72). CONCLUSION: This novel scoring tool uses clinical assessment of preintervention anatomic images to stratify the surgical complexity of endoscopic hysterectomy. It has rich and comprehensive evaluation capabilities and achieved moderate inter-rater and intrarater agreement. The tool can be used in conjunction with or instead of traditional markers of surgical complexity such as uterine weight, estimated blood loss, and operative time.


Assuntos
Escavação Retouterina , Histerectomia , Feminino , Humanos , Variações Dependentes do Observador , Duração da Cirurgia , Reprodutibilidade dos Testes
6.
Proc Natl Acad Sci U S A ; 115(17): 4375-4380, 2018 04 24.
Artigo em Inglês | MEDLINE | ID: mdl-29632195

RESUMO

Why do certain group members end up liking each other more than others? How does affective reciprocity arise in human groups? The prediction of interpersonal sentiment has been a long-standing pursuit in the social sciences. We combined fMRI and longitudinal social network data to test whether newly acquainted group members' reward-related neural responses to images of one another's faces predict their future interpersonal sentiment, even many months later. Specifically, we analyze associations between relationship-specific valuation activity and relationship-specific future liking. We found that one's own future (T2) liking of a particular group member is predicted jointly by actor's initial (T1) neural valuation of partner and by that partner's initial (T1) neural valuation of actor. These actor and partner effects exhibited equivalent predictive strength and were robust when statistically controlling for each other, both individuals' initial liking, and other potential drivers of liking. Behavioral findings indicated that liking was initially unreciprocated at T1 yet became strongly reciprocated by T2. The emergence of affective reciprocity was partly explained by the reciprocal pathways linking dyad members' T1 neural data both to their own and to each other's T2 liking outcomes. These findings elucidate interpersonal brain mechanisms that define how we ultimately end up liking particular interaction partners, how group members' initially idiosyncratic sentiments become reciprocated, and more broadly, how dyads evolve. This study advances a flexible framework for researching the neural foundations of interpersonal sentiments and social relations that-conceptually, methodologically, and statistically-emphasizes group members' neural interdependence.


Assuntos
Encéfalo/diagnóstico por imagem , Encéfalo/fisiologia , Emoções/fisiologia , Imageamento por Ressonância Magnética , Neurônios/fisiologia , Comportamento Social , Adulto , Feminino , Humanos , Masculino
7.
BMC Med Inform Decis Mak ; 21(1): 268, 2021 09 18.
Artigo em Inglês | MEDLINE | ID: mdl-34537047

RESUMO

BACKGROUND: The glycated hemoglobin (A1c) test is not recommended for sickle cell disease (SCD) patients. We examine ordering patterns of diabetes-related tests for SCD patients to explore misutilization of tests among this underserved population. METHODS: We used de-identified electronic health record (EHR) data in the Cerner Health Facts™ (HF) data warehouse to evaluate the frequency of A1c and fructosamine tests during 2010 to 2016, for 37,151 SCD patients from 393 healthcare facilities across the United States. After excluding facilities with no A1c data, we defined three groups of facilities based on the prevalence of SCD patients with A1c test(s): adherent facilities (no SCD patients with A1c test(s)), minor non-adherent facilities, major non-adherent facilities. RESULTS: We determined that 11% of SCD patients (3927 patients) treated at 393 facilities in the US received orders for at least one A1c test. Of the 3927 SCD patients with an A1c test, only 89 patients (2.3%) received an order for a fructosamine test. At the minor non-adherent facilities, 5% of the SCD patients received an A1c test while 58% of the SCD patients at the least adherent facilities had at least one A1c test. Overall, the percent of A1c tests ordered for SCD patients between 2010 and 2016 remained similar. CONCLUSIONS: Inappropriate A1c test orders among a sickle cell population is a significant quality gap. Interventions to advance adoption of professional recommendations that advocate for alternate tests, such as fructosamine, can guide clinicians in test selection to reduce this quality gap are discussed. The informatics strategy used in this work can inform other largescale analyses of lab test utilization using de-identified EHR data.


Assuntos
Anemia Falciforme , Diabetes Mellitus , Anemia Falciforme/diagnóstico , Registros Eletrônicos de Saúde , Frutosamina , Hemoglobinas Glicadas , Humanos , Estados Unidos
8.
Pediatr Emerg Care ; 37(12): e981-e987, 2021 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-31246788

RESUMO

OBJECTIVES: This study aimed to determine the rate and context in which opioids are used to treat migraine in adolescents and young adults seen in emergency care settings. METHODS: Data from 2010 to 2016 in the Cerner Health Facts electronic health record data warehouse were analyzed using multilevel logistic regression to estimate the population likelihood of an opioid being used in the emergency department (ED) to treat a primary diagnosis of migraine in adolescents and young adults and to evaluate the extent to which this likelihood varies as a function of characteristics of the patient (age, sex, race, and insurance), encounter (referral source, provider specialty, and encounter duration and year), and ED (region, setting, size, payer mix, and academic status). RESULTS: The study identified 14,494 eligible ED encounters with unique patients, of which 23% involved an opioid. Likelihood of being treated with opioids was significantly higher for patients who were older, female, white, and seen by a surgeon and who had longer encounters and encounters earlier in the time period sampled. Sites varied widely in percentage of encounters involving opioids (mean, 26.4% ± 20.1%; range, 0-100%), with higher rates associated with smaller sites with relatively higher proportions of commercially insured patients. CONCLUSIONS: Use of opioids in the ED to treat migraine in youth is fairly common, with rate variation reflecting broader trends in for whom opioids tend to be more likely to be prescribed. These findings may be helpful for benchmarking and informing quality improvement efforts aimed at reducing unwarranted opioid exposure in youth.


Assuntos
Serviços Médicos de Emergência , Transtornos de Enxaqueca , Adolescente , Analgésicos Opioides/uso terapêutico , Serviço Hospitalar de Emergência , Feminino , Humanos , Transtornos de Enxaqueca/tratamento farmacológico , Transtornos de Enxaqueca/epidemiologia , Padrões de Prática Médica , Estudos Retrospectivos , Adulto Jovem
9.
Gynecol Oncol ; 159(1): 72-78, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32771276

RESUMO

OBJECTIVE: Pegylated liposomal doxorubicin (PLD) in vitro may have immunomodulatory abilities and preclinical evidence suggests it synergizes with immune checkpoint blockade. We hypothesized that combining PLD and pembrolizumab would be active in patients with platinum-resistant ovarian cancer (PROC). METHODS: This was a single-arm, multi-center phase II trial. Eligible patients had PROC with ≤2 prior lines of cytotoxic therapy for recurrent or persistent disease. Twenty-six patients were enrolled and given pembrolizumab 200 mg intravenously (IV) every 3 weeks and PLD 40 mg/m2 IV every 4 weeks. Patients were assessed radiographically every 8 weeks. The primary endpoint was clinical benefit rate (CBR), defined as complete response (CR) + partial response (PR) + stable disease (SD) ≥24 weeks. The study was powered to detect an improvement in CBR from 25% to 50%, with rejection of the null hypothesis if at least 10 patients achieved clinical benefit. T-cell inflamed gene expression profiles (GEP) and PD-L1 were assessed and correlated with clinical outcome. RESULTS: Twenty-three patients were evaluable for best overall response. The study satisfied its primary endpoint, with 12 patients achieving clinical benefit for a CBR of 52.2% (95% CI 30.6-73.2%). There were 5 PRs (21.7%) and 1 CR (4.3%), for an overall response rate (ORR) of 26.1%. Six patients had SD lasting at least 24 weeks. Combination therapy was well tolerated without unexpected toxicities. CONCLUSIONS: The combination of pembrolizumab and PLD was manageable, without unexpected toxicities, and showed preliminary evidence of clinical benefit in the treatment of platinum resistant ovarian cancer. ORR and median PFS of combination therapy in this study was higher than historical comparisons of PLD alone or anti-PD-1/PD-L1 agents alone. TRIAL REGISTRATION: Clinicaltrials.gov identifier: NCT02865811.


Assuntos
Anticorpos Monoclonais Humanizados/administração & dosagem , Protocolos de Quimioterapia Combinada Antineoplásica/administração & dosagem , Carcinoma Epitelial do Ovário/tratamento farmacológico , Doxorrubicina/análogos & derivados , Neoplasias Ovarianas/tratamento farmacológico , Idoso , Anticorpos Monoclonais Humanizados/efeitos adversos , Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Carcinoma Epitelial do Ovário/diagnóstico , Carcinoma Epitelial do Ovário/imunologia , Carcinoma Epitelial do Ovário/patologia , Progressão da Doença , Intervalo Livre de Doença , Relação Dose-Resposta a Droga , Doxorrubicina/administração & dosagem , Doxorrubicina/efeitos adversos , Esquema de Medicação , Resistencia a Medicamentos Antineoplásicos , Feminino , Humanos , Infusões Intravenosas , Pessoa de Meia-Idade , Neoplasias Ovarianas/diagnóstico , Neoplasias Ovarianas/imunologia , Neoplasias Ovarianas/patologia , Polietilenoglicóis/administração & dosagem , Polietilenoglicóis/efeitos adversos , Receptor de Morte Celular Programada 1/antagonistas & inibidores , Receptor de Morte Celular Programada 1/imunologia , Intervalo Livre de Progressão
10.
Knee Surg Sports Traumatol Arthrosc ; 28(6): 1960-1970, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31542814

RESUMO

PURPOSE: A functional test battery (FTB) has been proposed to evaluate the readiness of return to activity after ACLR. However, there is limited evidence documenting the usefulness of an FTB. Therefore, the purpose of the current investigation was to compare knee joint landing biomechanics asymmetry during double-leg jump landing (DLJL) and single-leg jump cutting (SLJC) between healthy females and ACLR females who pass (ACLR-pass) or fail (ACLR-fail) an FTB before and after the completion of a sustained exercise protocol. METHOD: Eighteen ACLR females (ten ACLR-pass and eight ACLR-fail) and twelve healthy females performed an FTB including The 2000 International Knee Documentation Committee Subjective Knee Evaluation Form, the Knee Outcome Survey Activities of Daily Living Scale, quadriceps strength, and single-leg hop tests. DLJL and SLJC knee joint biomechanics asymmetry were measured before and after exercise. RESULTS: During DLJL, there were significant main effects of group on peak anterior tibial shear force (ATSF) asymmetry [F(2,27) = 3.86, p < 0.05, [Formula: see text] = 0.214] and peak vertical ground reaction force (vGRF) asymmetry [F(2,27) = 3.34, p = 0.05, [Formula: see text] = 0.198]. During SLJC, there was a significant group main effect for peak ATSF asymmetry [F(2,27) = 3.494, p = 0.04, [Formula: see text] = 0.206]. CONCLUSION: ACLR-fail exhibited greater asymmetry in peak ATSF during DLJL and SLJC compared to healthy females. In addition, ACLR-pass exhibited greater asymmetry in peak ATSF and peak vGRF during DLJL and SLJC, respectively, compared to healthy females. However, ACLR-fail did not exhibit any significant differences in landing biomechanics asymmetry during either task compared with ACLR-pass. Furthermore, the completion of a sustained exercise protocol did not affect knee joint landing biomechanics asymmetry across groups. LEVEL OF EVIDENCE: II.


Assuntos
Lesões do Ligamento Cruzado Anterior/cirurgia , Reconstrução do Ligamento Cruzado Anterior , Ligamento Cruzado Anterior/cirurgia , Volta ao Esporte , Atividades Cotidianas , Adolescente , Fenômenos Biomecânicos , Exercício Físico , Teste de Esforço , Feminino , Humanos , Joelho/fisiopatologia , Articulação do Joelho/cirurgia , Músculo Quadríceps/fisiopatologia , Tíbia/fisiopatologia , Adulto Jovem
11.
J Minim Invasive Gynecol ; 26(7): 1303-1310, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30611974

RESUMO

STUDY OBJECTIVE: To identify factors contributing to prolonged hospitalization for women undergoing myomectomy for uterine myomas. PATIENTS: Women undergoing myomectomy for uterine myomas during 2014 to 2016 were identified by the Current Procedural Terminology code. DESIGN: Retrospective population-based analysis of the American College of Surgeons National Surgical Quality Improvement Program (ACS-NSQIP) database. SETTING: Data from the American College of Surgeons National Surgical Quality Improvement Project. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The primary outcome was length of stay longer than the median (1 day). Preoperative, intraoperative, and postoperative variables were examined to determine predictors for prolonged length of stay (LOS). Seven thousand five hundred thirty-one women underwent abdominal or laparoscopic myomectomy for uterine myomas. Nonwhite race (black: odds ratio [OR] = 2.25; 95% confidence interval [CI], 2.01-2.51; Asian: OR = 1.54; 95% CI, 1.27-1.85; other/unknown: OR = 2.82; 95% CI, 2.43-3.27), preoperative hematocrit <38% (OR = 1.38; 95% CI, 1.26-1.52), body mass index ≥30.1 kg/m2 (OR = 1.36; 95% CI, 1.21-1.53), preoperative blood transfusion (OR = 3.70; 95% CI, 2.03-6.74), perioperative blood transfusion (OR = 6.64; 95% CI, 4.76-9.27), removal of ≥5 myomas (OR = 1.47; 95% CI, 1.28-1.70), and operative time >120 minutes (121-150 minutes: OR = 1.42; 95% CI, 1.15-1.77; 151-180 minutes: OR = 1.59; 95% CI, 1.24-2.03; ≥181 minutes: OR = 1.36; 95% CI, 1.10-1.69) predicted prolonged LOS. Laparoscopy protected against prolonged LOS (OR = 0.11; 95% CI, 0.09-0.13). CONCLUSIONS: Limited potentially modifiable perioperative factors contributing to prolonged LOS for abdominal or laparoscopic myomectomy were identified and suggest areas for targeted interventions.


Assuntos
Tempo de Internação/estatística & dados numéricos , Mioma/cirurgia , Miomectomia Uterina/estatística & dados numéricos , Neoplasias Uterinas/cirurgia , Adulto , Comorbidade , Feminino , Humanos , Pessoa de Meia-Idade , Complicações Pós-Operatórias , Estudos Retrospectivos , Adulto Jovem
12.
J Genet Couns ; 27(1): 104-114, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-28689263

RESUMO

The goal of this study was to explore variation among informed consent documents for clinical whole exome sequencing (WES) in order to identify the level of consistency with the recommendations from the American College of Medical Genetics and Genomics (ACMG) and the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) regarding informed consent for clinical WES. Recommendations were organized into a framework of key points for analysis. Content analysis was conducted on a sample of informed consent documents for clinical WES downloaded from 18 laboratory websites. We observed considerable variability in the content of informed consent documents among the sample of 18 laboratories. The mean Flesch-Kincaid Grade Level, a measure of readability, of the consent forms was 10.8, above the recommended 8th grade level. For each of the individual ACMG and Bioethics Commission recommendations, the frequency of inclusion ranged from 11% to 100%. For the overall list of 18 consent items, inclusion ranged from 11 to 17 items (Mean = 13.44, Mode = 14). This analysis will be useful to laboratories that wish to create informed consent documents that comply with these recommendations. The consistent use of standardized informed consent process could improve communication between clinicians and patients and increase understanding of genetic testing.


Assuntos
Termos de Consentimento/normas , Sequenciamento do Exoma/normas , Aconselhamento Genético/normas , Testes Genéticos/normas , Doenças Genéticas Inatas , Humanos , Consentimento Livre e Esclarecido/normas , Relatório de Pesquisa
13.
J Biomed Inform ; 60: 84-94, 2016 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-26778834

RESUMO

Genomics is a promising tool that is becoming more widely available to improve the care and treatment of individuals. While there is much assertion, genomics will most certainly require the use of clinical decision support (CDS) to be fully realized in the routine clinical setting. The National Human Genome Research Institute (NHGRI) of the National Institutes of Health recently convened an in-person, multi-day meeting on this topic. It was widely recognized that there is a need to promote the innovation and development of resources for genomic CDS such as a CDS sandbox. The purpose of this study was to evaluate a proposed approach for such a genomic CDS sandbox among domain experts and potential users. Survey results indicate a significant interest and desire for a genomic CDS sandbox environment among domain experts. These results will be used to guide the development of a genomic CDS sandbox.


Assuntos
Biologia Computacional , Sistemas de Apoio a Decisões Clínicas , Genômica/métodos , Congressos como Assunto , Humanos , National Human Genome Research Institute (U.S.) , Software , Estados Unidos
14.
J Biomed Inform ; 63: 1-10, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-27423699

RESUMO

The objective of this study was to develop a high-fidelity prototype for delivering multi-gene sequencing panel (GS) reports to clinicians that simulates the user experience of a final application. The delivery and use of GS reports can occur within complex and high-paced healthcare environments. We employ a user-centered software design approach in a focus group setting in order to facilitate gathering rich contextual information from a diverse group of stakeholders potentially impacted by the delivery of GS reports relevant to two precision medicine programs at the University of Maryland Medical Center. Responses from focus group sessions were transcribed, coded and analyzed by two team members. Notification mechanisms and information resources preferred by participants from our first phase of focus groups were incorporated into scenarios and the design of a software prototype for delivering GS reports. The goal of our second phase of focus group, to gain input on the prototype software design, was accomplished through conducting task walkthroughs with GS reporting scenarios. Preferences for notification, content and consultation from genetics specialists appeared to depend upon familiarity with scenarios for ordering and delivering GS reports. Despite familiarity with some aspects of the scenarios we proposed, many of our participants agreed that they would likely seek consultation from a genetics specialist after viewing the test reports. In addition, participants offered design and content recommendations. Findings illustrated a need to support customized notification approaches, user-specific information, and access to genetics specialists with GS reports. These design principles can be incorporated into software applications that deliver GS reports. Our user-centered approach to conduct this assessment and the specific input we received from clinicians may also be relevant to others working on similar projects.


Assuntos
Grupos Focais , Medicina de Precisão , Análise de Sequência de DNA , Design de Software , Software , Atenção à Saúde , Humanos , Interface Usuário-Computador
15.
BMC Health Serv Res ; 15: 384, 2015 Sep 15.
Artigo em Inglês | MEDLINE | ID: mdl-26373538

RESUMO

BACKGROUND: The growing availability of electronic health records (EHRs) in the US could provide researchers with a more detailed and clinically relevant alternative to using claims-based data. METHODS: In this study we compared a very large EHR database (Health Facts©) to a well-established population estimate (Nationwide Inpatient Sample). Weighted comparisons were made using t-value and relative difference over diagnoses and procedures for the year 2010. RESULTS: The two databases have a similar distribution pattern across all data elements, with 24 of 50 data elements being statistically similar between the two data sources. In general, differences that were found are consistent across diagnosis and procedures categories and were specific to the psychiatric-behavioral and obstetrics-gynecology services areas. CONCLUSIONS: Large EHR databases have the potential to be a useful addition to health services researchers, although they require different analytic techniques compared to administrative databases; more research is needed to understand the differences.


Assuntos
Bases de Dados Factuais , Registros Eletrônicos de Saúde , Pesquisa sobre Serviços de Saúde , Pacientes Internados , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estados Unidos
16.
J Strength Cond Res ; 29(2): 545-51, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25187243

RESUMO

The purpose of this study was to examine the relationships between maximum vertical jump height and (a) rate of torque development (RTD) calculated during 2 time intervals, 0-50 milliseconds (RTD50) and 0-200 milliseconds (RTD200) after torque onset and (b) peak torque (PT) for each of the triple extensor muscle groups. Thirty recreationally active individuals performed maximal isometric voluntary contractions (MVIC) of the hip, knee and ankle extensors, and a countermovement vertical jump. Rate of torque development was calculated from 0 to 50 (RTD50) and 0 to 200 (RTD200) milliseconds after the onset of joint torque. Peak torque was identified and defined as the maximum torque value during each MVIC trial. Greater vertical jump height was associated with greater knee and ankle extension RTD50, RTD200, and PT (p ≤ 0.05). However, hip extension RTD50, RTD200, and PT were not significantly related to maximal vertical jump height (p > 0.05). The results indicate that 47.6 and 32.5% of the variability in vertical jump height was explained by knee and ankle extensor RTD50, respectively. Knee and ankle extensor RTD50 also seemed to be more closely related to vertical jump performance than RTD200 (knee extensor: 28.1% and ankle extensor: 28.1%) and PT (knee extensor: 31.4% and ankle extensor: 13.7%). Overall, these results suggest that training specifically targeted to improve knee and ankle extension RTD, especially during the early phases of muscle contraction, may be effective for increasing maximal vertical jump performance.


Assuntos
Contração Isométrica/fisiologia , Extremidade Inferior/fisiologia , Movimento/fisiologia , Músculo Esquelético/fisiologia , Adolescente , Adulto , Estudos Transversais , Feminino , Humanos , Articulações/fisiologia , Masculino , Torque , Adulto Jovem
17.
Arch Gynecol Obstet ; 289(1): 101-5, 2014 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-23839534

RESUMO

PURPOSE: To compare the frequency of minimally invasive surgical approach to hysterectomy between two time periods, during which the use of the robotic technique has rapidly increased. METHODS: This study is a retrospective review of 623 consecutive patients who underwent hysterectomy for benign indications at the Division of Minimally Invasive Gynecologic Surgery via laparoscopic, robotic, laparotomy, mini-laparotomy and vaginal approaches from July 2004 to June 2010. "Early period" refers to the first 311 patients, and "late period" refers to the remaining 312 patients. RESULTS: The characteristics of patients from the early and late periods were comparable in terms of age, BMI and uterine weight. The rates of hysterectomy by laparotomy, traditional laparoscopy, robotic, vaginal, and mini-laparotomy were significantly different between the early and late periods (17.7 to 5.4%, 39.5 to 17.6%, 23.8 to 64.1%, 5.8 to 4.8% and 13.2 to 8%, respectively, P < 0.01), with the overall rates of hysterectomies completed via a minimally invasive approach increasing from 82.3 to 94.6%, respectively (P < 0.01). There were no differences in surgical complications between the two periods. CONCLUSION: Increased utilization of a robotic approach to hysterectomy correlates with decreasing rates of abdominal hysterectomy concurrent with decreasing rates of traditional laparoscopic hysterectomy. This shift in surgical approach to hysterectomy, while beneficial in increasing the rates of minimally invasive approach to hysterectomy, may have significant economic implications due to the higher cost of robotic surgery.


Assuntos
Histerectomia/métodos , Laparoscopia/métodos , Robótica/métodos , Útero/cirurgia , Adulto , Feminino , Custos de Cuidados de Saúde , Humanos , Histerectomia/economia , Histerectomia/tendências , Laparoscopia/economia , Laparoscopia/tendências , Pessoa de Meia-Idade , Estudos Retrospectivos , Robótica/economia , Robótica/tendências
18.
J Healthc Inform Res ; 8(1): 50-64, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38273985

RESUMO

Chronic cough is a common condition; until recently, no International Classification of Diseases (ICD) code for chronic cough existed; therefore, the true scope and burden of chronic cough is unclear. Using established algorithms, we examined chronic cough patients and their risk profiles, recurrent cough episodes, and subsequent 1-year health care utilization in the nationwide Cerner EHR data resource, compared with those with acute cough. An ICD-based algorithm was applied to the Cerner Health Facts EHR database to derive a phenotype of chronic cough defined as three ICD-based "cough" encounters 14-days apart over a 56-to-120-day period from 2015 to 2017. Demographics, comorbidities, and outcomes (1-year outpatient, emergency, and inpatient encounters) were collected for the chronic cough cohort and acute cough cohort. The chronic cough cohort was 61.5% female, 70.4% white, and 15.2% African American, with 13.7% being of Asian, Native American, or unknown race. Compared with the acute cough cohort, chronic cough patients were more likely to be older, female, and have chronic pulmonary disease, obesity, and depression. Predictors of recurrent chronic cough were older age and race. Those with chronic cough had more outpatient (2.48 ± 2.10 vs. 1.48 ± 0.99; SMD = 0.94), emergency (1.90 ± 2.26 vs. 1.23 ± 0.68; SMD = 0.82), and inpatient (1.11 ± 0.36 vs. 1.05 ± 0.24, SMD = 0.24) encounters compared with acute cough. While EHR-based data may provide a useful resource to identify chronic cough phenotypes, supplementary data approaches and screening methods for chronic cough can further identify the scope of the problem.

19.
Dermatol Ther ; 26(3): 222-35, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-23742283

RESUMO

Atypical ulcers of the skin challenge the dermatologist with respect to recognition, diagnosis, management, and treatment. The entire gamut of pathogenic categories including vascular, inflammatory, neoplastic, genetic, medication-related, and infectious processes may give rise to atypical ulcers. By definition, these ulcers are unusual, and accurate diagnosis may ultimately require the clinician to violate the dictum that "common things are common." Atypical ulcers may present with features that the clinician has not previously encountered, or may present with seemingly typical features that actually mislead due to phenotypic mimicry. Because skin ulcers are inherently tissue-destructive, and may reflect an underlying systemic disease process, there is heightened urgency to achieving an accurate diagnosis and initiating appropriate therapy.


Assuntos
Úlcera Cutânea/terapia , Amebíase/complicações , Antraz/complicações , Artrite Reumatoide/complicações , Humanos , Hidroxiureia/toxicidade , Síndrome de Klinefelter/terapia , Líquen Plano/terapia , Metotrexato/toxicidade , Necrobiose Lipoídica/terapia , Poliarterite Nodosa/terapia , Pioderma Gangrenoso/terapia , Sarcoidose/complicações , Úlcera Cutânea/diagnóstico , Úlcera Cutânea/etiologia
20.
JAC Antimicrob Resist ; 5(1): dlac128, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36601546

RESUMO

Background: Antibiotic resistance (AR) is a global public health threat. Surveillance of baseline AR and trends and emerging resistance among priority bacterial isolates with respect to the age of the patients and the type of healthcare setting are required due to differences in antimicrobial need and use in these populations. Methods: We performed a retrospective study using deidentified electronic health record (EHR) data in the Cerner Health Facts™ data warehouse. Antibiotic susceptibility data were extracted for all bacterial isolates of interest at 166 non-affiliated healthcare facilities reporting microbiology susceptibility results of the FDA recommended antibiotics between the years 2012 to 2017. We assessed and visualized the slope coefficient from linear regression to compare changes in resistance over time for the four patient care groups. Results: The trends in resistance rates to clinically relevant antibiotics were influenced by age and care setting. For example, ertapenem-resistant Enterobacter cloacae isolates from children overall increased significantly compared with adults (0.7% to 9.8%, 2.1% to 2.8%, P = 0.00013) and isolates from children in paediatric facilities increased significantly compared with facilities treating adults and children (0.1% to 27.1%, 0.9% to 3.8%, P = 0.0002). Conclusions: Large-scale analysis of EHR data from 166 facilities shows that AR patterns for some bug-drug combinations vary by care setting and patient age. We describe novel data visualizations to interpret large-scale EHR data on the prevalence and trends of AR that should influence antimicrobial prescribing and antimicrobial stewardship programme interventions.

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