scholarly journals Understanding Implementation Challenges to Genetic Testing for Familial Hypercholesterolemia in the United States

2019 ◽  
Vol 9 (1) ◽  
pp. 9 ◽  
Author(s):  
Rachele Hendricks-Sturrup ◽  
Christine Lu
Keyword(s):  
United States ◽  
Genetic Testing ◽  
Familial Hypercholesterolemia ◽  
Ethnic Diversity ◽  
Heart Association ◽  
The United States ◽  
Cvd Risk ◽  
Implementation Challenges ◽  
The Us ◽  
Control And Prevention

Cardiovascular disease (CVD) is the leading cause of death in the United States (US), with familial hypercholesterolemia (FH) being a major inherited and genetic risk factor for premature CVD and atherosclerosis. Genetic testing has helped patients and providers confirm the presence of known pathogenic and likely pathogenic variations in FH-associated genes. Key organizations, such as the Centers for Disease Control and Prevention (CDC), American Heart Association (AHA), FH Foundation, and National Lipid Association (NLA), have recognized the clinical utility of FH genetic testing. However, FH genetic testing is underutilized in clinical practice in the US for reasons that are underexplored through the lens of implementation science. In this commentary, we discuss seven key implementation challenges that must be overcome to strengthen the clinical adoption of FH genetic testing in the US. These implementation challenges center on evidence of cost-effectiveness, navigating patient and provider preferences and concerns, gender and ethnic diversity and representation in genetic testing, and establishing clinical consensus around FH genetic testing based on the latest and most relevant research findings. Overcoming these implementation challenges is imperative to the mission of reducing CVD risk in the US.

scholarly journals Barriers and Facilitators to Genetic Testing for Familial Hypercholesterolemia in the United States: A Review

2019 ◽  
Vol 9 (3) ◽  
pp. 32 ◽  
Author(s):  
Rachele M. Hendricks-Sturrup ◽  
Kathleen M. Mazor ◽  
Amy C. Sturm ◽  
Christine Y. Lu
Keyword(s):  
United States ◽  
Genetic Testing ◽  
Familial Hypercholesterolemia ◽  
Systematic Approach ◽  
The United States ◽  
Barriers And Facilitators ◽  
Clinical Settings ◽  
Vascular Events ◽  
Potential Barriers ◽  
The Us

Familial Hypercholesterolemia (FH) is an underdiagnosed condition in the United States (US) and globally, affecting an estimated 1/250 individuals. It is a genetic risk factor for premature cardiovascular disease and is responsible for an estimated 600,000 to 1.2 million preventable vascular events. Studies show that FH genetic testing can identify a causal gene variant in 60 to 80% of clinically suspected FH cases. However, FH genetic testing is currently underutilized in clinical settings in the US despite clinical recommendations and evidence supporting its use. Reasons for underutilization are not well understood. We conducted a literature review in the PubMed/MEDLINE database and eight peer-reviewed journals. After filtering for and reviewing 2340 articles against our inclusion criteria, we included nine commentaries or expert opinions and eight empirical studies reported between January 2014 and March 2019 in our review. After applying the Consolidated Framework for Implementation Research (CFIR), we identified a total of 26 potential barriers and 15 potential facilitators (estimated barrier to facilitator ratio of 1.73). We further estimated ratios of potential barriers to facilitators for each CFIR domain (Characteristics of Intervention, Outer Setting, Inner Setting, Characteristics of Individuals, and Process). Findings derived from our systematic approach to the literature and calculations of estimated baseline ratios of barriers and facilitators can guide future research to understand FH genetic testing implementation in diverse clinical settings. Our systematic approach to the CFIR could also be used as a model to understand or compare barriers and facilitators to other evidence-based genetic testing processes in health care settings in the US and abroad.

Political Climate, Voter Suppression Policies and Federal Sentencing Outcomes

2020 ◽  
Vol 60 (5) ◽  
pp. 1155-1180
Author(s):  
Jeffrey S Nowacki ◽  
Danielle Creech ◽  
Megan Parks
Keyword(s):  
United States ◽  
Ethnic Diversity ◽  
The United States ◽  
Sentence Length ◽  
District Courts ◽  
Racial Threat ◽  
Political Climate ◽  
The Us ◽  
Voter Suppression ◽  
And Gender

Abstract Many states in the United States have recently implemented voter suppression policies, which make voting more difficult, particularly for members of marginalized populations (e.g. non-white and female voters). In this article, we examine how these policies and other measures of political climate influence criminal sentencing in US district courts. Using 2015 data from the US Sentencing Commission, alongside other district-level measures, we find both direct and conditioning relationships between political climate and extra-legal variables. Specifically, we find that, while voter suppression policies do not directly affect sentence length, racial threat effects are enhanced in districts governed by such policies. Conversely, districts without such policies see larger mitigating effects at high levels of ethnic diversity and gender equality.

scholarly journals The Check and Report Ebola (CARE+) Program to Monitor Travelers for Ebola After Arrival to the United States, 2014-2016

2019 ◽  
Vol 134 (6) ◽  
pp. 592-598 ◽  
Author(s):  
Heather A. Joseph ◽  
Abbey E. Wojno ◽  
Kelly Winter ◽  
Onalee Grady-Erickson ◽  
Erin Hawes ◽  
...  
Keyword(s):  
Public Health ◽  
United States ◽  
West Africa ◽  
Emerging Infectious Diseases ◽  
Care Program ◽  
The United States ◽  
The Us ◽  
Us Government ◽  
Public Health Authorities ◽  
Control And Prevention

The 2014-2016 Ebola epidemic in West Africa influenced how public health officials considered migration and emerging infectious diseases. Responding to the public’s concerns, the US government introduced enhanced entry screening and post-arrival monitoring by public health authorities to reduce the risk of importation and domestic transmission of Ebola while continuing to allow travel from West Africa. This case study describes a new initiative, the Check and Report Ebola (CARE+) program that engaged travelers arriving to the United States from countries with Ebola outbreaks. The Centers for Disease Control and Prevention employed CARE ambassadors, who quickly communicated with incoming travelers and gave them practical resources to boost their participation in monitoring for Ebola. The program aimed to increase travelers’ knowledge of Ebola symptoms and how to seek medical care safely, increase travelers’ awareness of monitoring requirements, reduce barriers to monitoring, and increase trust in the US public health system. This program could be adapted for use in future outbreaks that involve the potential importation of disease and require the education and active engagement of travelers to participate in post-arrival monitoring.

scholarly journals A Global Review on the Utility of Genetic Testing for Familial Hypercholesterolemia

2020 ◽  
Vol 10 (2) ◽  
pp. 23 ◽  
Author(s):  
Rachele M. Hendricks-Sturrup ◽  
Jodi Clark-LoCascio ◽  
Christine Y. Lu
Keyword(s):  
United States ◽  
Genetic Testing ◽  
Familial Hypercholesterolemia ◽  
Clinical Outcomes ◽  
Ldl Cholesterol ◽  
The United States ◽  
Global Perspective ◽  
Ongoing Research ◽  
Increased Risk ◽  
Patient Reported

Familial hypercholesterolemia (FH) is a genetic disorder of cholesterol metabolism that affects an estimated 1/250 persons in the United States and abroad. FH is hallmarked by high low-density lipoprotein (LDL) cholesterol and an increased risk of premature atherosclerotic cardiovascular disease. This review summarizes recent global evidence showing the utility of FH genetic testing across diverse populations. Clinical and other qualitative outcomes following FH genetic testing were improved FH diagnosis, treatment initiation or continued treatment, treatment modification, improved total or LDL cholesterol levels, education on lifestyle management, and genetic counseling. This summary of evidence should be considered by those seeking overall evidence and knowledge gaps on the utility of FH genetic testing from a global perspective and for certain ethnic and age populations. These findings can be used to inform insurance policies and coverage decisions for FH genetic testing, policy recommendations to reduce the clinical and public health burden of FH, clinical practice and guidelines to improve the management of FH populations, and ongoing research involving FH genetic testing. We conclude that further investigations are needed to examine: (1) non-clinical outcomes following FH genetic testing; (2) patient-reported outcomes following FH genetic testing to convey patient experiences, values, and goals; and (3) clinical outcomes following FH genetic testing in non-Caucasian and pediatric populations in the United States and abroad.

Genomic/genetic testing patterns for patients with metastatic castrate-resistant prostate cancer: Results from a real-world study in the United States.

2021 ◽  
Vol 39 (6_suppl) ◽  
pp. 49-49
Author(s):  
Andrea Leith ◽  
Amanda Ribbands ◽  
Matthew Last ◽  
Alicia Gayle ◽  
Sarah Payne ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
United States ◽  
Genetic Testing ◽  
Real World ◽  
Patient Characteristics ◽  
The United States ◽  
Molecular Testing ◽  
Cancer Disease ◽  
The Us ◽  
Castrate Resistant

49 Background: In May 2020, Olaparib was approved for HRRm mCRPC post progression on abiraterone and enzalutamide, and rucaparib was approved for BRCAm mCPRC following progression on androgen receptor targeted inhibitors and prior taxane therapy for mCRPC. HRRm are associated with approximately 25% of mCRPC and may be derived from germline or somatic origin. Somatic and germline alterations can be detected by tumour testing, but to differentiate between these, independent germline testing is needed. This study examined real-world genomic/genetic testing (GT) patterns in patients (pts) diagnosed with mCRPC in the United States (US). Methods: Data were drawn from the Adelphi Prostate Cancer Disease Specific Programme; a point-in-time survey administered to oncologists (onc), urologists (uro) and surgeons (sur) between January and August 2020 in the US. Physicians (phys) completed an attitudinal survey and a patient record form for the next four to nine mCRPC pts seen. Study variables included patient demographics, clinical factors and GT patterns. HRRm testers were defined as phys who tested for HRRm. Pts were identified as positive, negative or unknown depending on the outcome of the HRRm test. Results: A total of 72 phys (69% onc/ 29% uro/ 1% sur; 40% academic vs. 60% community) reported on 346 mCRPC pts. 41% of phys were based in the Northeast, 24% Midwest, 23% South and 13% in the West region of the US. 65 phys (90%) reported having access to overall GT; of these 5% identified as having access to germline tests only, while 94% were able to test for germline and somatic mutations. Challenges to conducting GT overall were ‘cost per test’ (50%), ‘having to send out for the tests (within country)’ (25%), ‘inadequate sample available’ (25%) and ‘patient refusal’ (25%). GT was typically conducted at identification of castrate-resistance (52%), metastases (51%) and at initial diagnosis (49%). 72% of total phys were HRRm testers; for these, patient characteristics primarily driving HRRm testing included Ashkenazi Jewish heritage (63%) and ECOG of 2-4 (58%). Other common drivers were family history, young diagnosis age and hormone therapy failure (all 46%). 132 (38% of 326) mCRPC pts were tested for HRRm; 39% of tested pts were identified with a HRRm. Most common HRRm tested were BRCA1 (90%), BRCA2 (89%) and ATM (55%). Conclusions: In this study majority of US phys had access to GT, but testing was only performed in 38% of pts with mCRPC. The higher than expected % of pts identified with an HRRm suggest that molecular testing was prioritised in high risk populations, as identified by the phys. With the recent approval of olaparib and rucaparib, GT may become more routine in clinical practice to identify eligible pts. Broader testing may also depend on addressing other barriers to testing including cost and testing logistics/practicalities.

Mortality in the US by education level

2020 ◽  
Vol 14 (2) ◽  
pp. 384-419
Author(s):  
Cristian Redondo Lourés ◽  
Andrew J. G. Cairns
Keyword(s):  
United States ◽  
Disease Control ◽  
Cause Of Death ◽  
The United States ◽  
Mortality Rates ◽  
Education Level ◽  
The Us ◽  
Control And Prevention ◽  
Centers For Disease Control ◽  
Death Data

AbstractDifferent mortality rates for different socio-economic groups within a population have been consistently reported throughout the years. In this study, we aim to exploit data from multiple public sources, including highly detailed cause-of-death data from the United States Centers for Disease Control and Prevention, to explore the mortality gap between the better and worse off in the US during the period 1989–2015, using education as a proxy.

scholarly journals Estimates of presumed population immunity to SARS-CoV-2 by state in the United States, August 2021

2021 ◽  
Author(s):  
Marie C.D. Stoner ◽  
Frederick J. Angulo ◽  
Sarah Rhea ◽  
Linda Morris Brown ◽  
Jessica E. Atwell ◽  
...  
Keyword(s):  
United States ◽  
Natural Infection ◽  
Population Level ◽  
The United States ◽  
Viral Transmission ◽  
Population Immunity ◽  
Seroprevalence Data ◽  
The Us ◽  
Control And Prevention ◽  
Waning Immunity

ABSTRACTBackgroundInformation is needed to monitor progress toward a level of population immunity to SARS-CoV-2 sufficient to disrupt viral transmission. We estimated the percentage of the United States (US) population with presumed immunity to SARS-CoV-2 due to vaccination, natural infection, or both as of August 26, 2021.MethodsPublicly available data as of August 26, 2021, from the Centers for Disease Control and Prevention (CDC) were used to calculate presumed population immunity by state. Seroprevalence data were used to estimate the percentage of the population previously infected with SARS-CoV-2, with adjustments for underreporting. Vaccination coverage data for both fully and partially vaccinated persons were used to calculate presumed immunity from vaccination. Finally, we estimated the percentage of the total population in each state with presumed immunity to SARS-CoV-2, with a sensitivity analysis to account for waning immunity, and compared these estimates to a range of population immunity thresholds.ResultsPresumed population immunity varied among states (43.1% to 70.6%), with 19 states with 60% or less of their population having been infected or vaccinated. Four states have presumed immunity greater than thresholds estimated to be sufficient to disrupt transmission of less infectious variants (67%), and none were greater than the threshold estimated for more infectious variants (78% or higher).ConclusionsThe US remains a distance below the threshold sufficient to disrupt viral transmission, with some states remarkably low. As more infectious variants emerge, it is critical that vaccination efforts intensify across all states and ages for which the vaccines are approved.SummaryAs of August 26, 2021, no state has reached a population level of immunity thought to be sufficient to disrupt transmission. (78% or higher), with some states having remarkably low presumed immunity.

Child abuse in the United States

2014 ◽  
Author(s):  
Margaret Spinelli
Keyword(s):  
United States ◽  
Child Abuse ◽  
Disease Control ◽  
Child Abuse And Neglect ◽  
The United States ◽  
Alternative Response ◽  
The Us ◽  
Abuse And Neglect ◽  
Control And Prevention ◽  
Centers For Disease Control

Child abuse is a major cause of morbidity and mortality in the United States and other countries. It is the second leading cause of death among children in the US. All 50 States, the District of Columbia, and the US Territories have mandatory child abuse and neglect reporting laws that require certain professionals and institutions to report suspected maltreatment to a child protective services (CPS) agency. Four major types of maltreatment are considered: neglect, physical abuse, psychological maltreatment, and sexual abuse (Centers for Disease Control and Prevention 2010). Once an allegation or referral of child abuse is received by a CPS agency, the majority of reports receive investigations to establish whether or not an intervention is needed. Some reports receive an alternative response in which safety and risk assessments are conducted, but the focus is on working with the family to address issues. Investigations involve gathering evidence to substantiate the alleged maltreatment. Data from reports on child abuse is derived from the National Child Abuse and Neglect Data System (NCANDS), which aggregates and publishes statistics from state child protection agencies. The first report from NCANDS was based on data for 1990. Case-level data include information about the characteristics of reports of abuse and neglect that are made to CPS agencies, the children involved, the types of maltreatment that are alleged, the dispositions of the CPS responses, the risk factors of the child and the caregivers, the services that are provided, and the perpetrators (Centers for Disease Control and Prevention 2010). During 2010, the NCANSDS reported that an estimated 3.3 million referrals estimated to include 5.9 million children were received by CPS agencies. Of the nearly 2 million reports that were screened and received a CPS response, 90.3% received an investigation response and 9.7% received an alternative response (Centers for Disease Control and Prevention 2010). Of the 1,793,724 reports that received an investigation in 2010, 436,321 were substantiated; 24,976 were found to be indicated (likely but unsubstantiated); and 1,262,118 were found to be unsubstantiated. Three-fifths of reports of alleged child abuse and neglect were made by professionals.

Preparing for SARS-CoV-2 Vaccines in US Immigrant Communities: Strategies for Allocation, Distribution, and Communication

2020 ◽  
pp. e1-e5
Author(s):  
Eva H. Clark ◽  
Karla Fredricks ◽  
Laila Woc-Colburn ◽  
Maria Elena Bottazzi ◽  
Jill Weatherhead
Keyword(s):  
Public Health ◽  
United States ◽  
Department Of Defense ◽  
Population Level ◽  
The United States ◽  
Immigrant Communities ◽  
Private Partnership ◽  
The Us ◽  
Us Government ◽  
Control And Prevention

Widely administered efficacious severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) vaccines are the safest and most efficient way to achieve individual- and population-level immunity, making SARS-CoV-2 vaccination the most viable strategy for controlling the coronavirus disease 2019 (COVID-19) pandemic in the United States. To this end, the US government has invested more than $10 billion in “Operation Warp Speed,” a public-private partnership including the Centers for Disease Control and Prevention (CDC), the US Food and Drug Administration (FDA), and the US Department of Defense. Operation Warp Speed funded the development of several SARS-CoV-2 vaccines and aimed to deliver 300 million doses of a vaccine by the ambitious date of January 2021. (Am J Public Health. Published online ahead of print December 22, 2020: e1–e5. https://doi.org/10.2105/AJPH.2020.306047 )

scholarly journals United States smallpox response plans: a commentary from the Bioterrorism Taskforce (BICHAT) perspective

2002 ◽  
Vol 6 (43) ◽  
Author(s):  
J Hendriks ◽  
A Tegnell ◽  
P Bossi ◽  
A Baka ◽  
F van Loock ◽  
...  
Keyword(s):  
United States ◽  
Large Population ◽  
The United States ◽  
Crucial Issue ◽  
Defense Department ◽  
Preparedness Plan ◽  
The Us ◽  
Control And Prevention ◽  
Deliberate Release ◽  
Response Plan

The US plan As the United States (US) continues to expand counterterrorism capabilities, smallpox has emerged as perhaps the most feared biological weapon because it is so contagious and deadly. With the possibility of a war with Iraq, the US Defense Department has asked for enough vaccine from the national smallpox vaccine stockpile for 1 million military personnel, to be available by the beginning of November 2002. To protect US citizens against a deliberate release of the smallpox virus, US federal experts have been working on a comprehensive preparedness plan with two tracks: a (pre-event) vaccination programme for the emergency medical workers most likely to see an initial case of smallpox, and a (post- event) mass vaccination plan if an attack occurs. The latter is now available and has recently been distributed to all states by the Centers for Disease Control and Prevention (CDC) (http://www.bt.cdc.gov/agent/smallpox/response-plan/index.asp). The documentation provided includes many detailed instructions and recommendations on the logistics that go with such a massive campaign. Of particular interest are the forms included for obtaining consent from people about to be vaccinated - a crucial issue. The manual states that following a confirmed smallpox outbreak in the US, rapid voluntary vaccination of a large population may be required.

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