scholarly journals Establishing a National Community of Practice for Newborn Screening Follow-Up

2021 ◽  
Vol 7 (3) ◽  
pp. 49
Author(s):  
Erin Darby ◽  
John Thompson ◽  
Carol Johnson ◽  
Sikha Singh ◽  
Jelili Ojodu

Newborn screening (NBS) follow-up programs in the United States are managed at the state level, leaving limited opportunities for collaboration across programs and coordinated resource sharing. The Newborn Screening Technical assistance and Evaluation Program (NewSTEPs), a program of the Association of Public Health Laboratories (APHL), has established a national community of practice for NBS follow-up by creating a network of follow-up staff and stakeholders through education and engagement opportunities. The activities of NewSTEPs in support of NBS follow-up have strengthened information dissemination, collaboration, data collection and technical assistance-driven mentorship across the national system.

2019 ◽  
Vol 5 (3) ◽  
pp. 34 ◽  
Author(s):  
Careema Yusuf ◽  
Marci K. Sontag ◽  
Joshua Miller ◽  
Yvonne Kellar-Guenther ◽  
Sarah McKasson ◽  
...  

Newborn screening is a public health program facilitated by state public health departments with the goal of improving the health of affected newborns throughout the country. Experts in the newborn screening community established a panel of eight quality indicators (QIs) to track quality practices within and across the United States newborn screening system. The indicators were developed following iterative refinement, consensus building, and evaluation. The Newborn Screening Technical assistance and Evaluation Program (NewSTEPs) implemented a national data repository in 2013 that captures the quality improvement metrics from each state. The QIs span the newborn screening process from collection of a dried blood spot through medical intervention for a screened condition. These data are collected and analyzed to support data-driven outcome assessments and tracking performance to improve the quality of the newborn screening system.


2020 ◽  
Vol 6 (2) ◽  
pp. 48
Author(s):  
Kshea Hale ◽  
Yvonne Kellar-Guenther ◽  
Sarah McKasson ◽  
Sikha Singh ◽  
Jelili Ojodu

Public health programs in the United States screen more than four million babies each year for at least 30 genetic disorders. The Health and Human Services (HHS) Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) recommends the disorders for state newborn screening (NBS) programs to screen. ACHDNC updated the Recommended Uniform Screening Panel (RUSP) to include Pompe disease in March 2015. To support the expansion of screening for Pompe disease, the Association of Public Health Laboratories (APHL) proposed the Newborn Screening Technical assistance and Evaluation Program (NewSTEPs) New Disorders Implementation Project, funded by the HHS’ Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau (MCHB). Through this project, APHL provided financial support to 15 state NBS programs to enable full implementation of screening for Pompe disease. As of April 27, 2020, nine of the 15 programs had fully implemented Pompe disease newborn screening and six programs are currently pursuing implementation. This article will discuss how states advanced to statewide implementation of screening for Pompe disease, the challenges associated with implementing screening for this condition, the lessons learned during the project, and recommendations for implementing screening for Pompe disease.


2021 ◽  
Vol 7 (4) ◽  
pp. 83
Author(s):  
Michael A. Bender ◽  
Mary Hulihan ◽  
Mary Christine Dorley ◽  
Maria del Pilar Aguinaga ◽  
Jelili Ojodu ◽  
...  

Beta-thalassemia, a heritable condition of abnormal hemoglobin production, is not a core condition on the United States Recommended Uniform Screening Panel (RUSP) for state and territorial newborn screening (NBS) programs. However, screening for sickle cell disease (which is on the core RUSP) also detects reduced or absent levels of hemoglobin (Hb) A and certain other Hb variants associated with beta-thalassemia and, thus, allows for a timely referral to appropriate healthcare to minimize sequalae of the disease. The Association of Public Health Laboratories’ Hemoglobinopathy Workgroup administered a comprehensive survey of all U.S. NBS programs to assess beta-thalassemia testing methodologies, the cutoffs for defining beta-thalassemia major, and the reporting and follow-up practices. Forty-six (87%) of the programs responded. Thirty-nine of the 46 responding programs (85%) report some form of suspected beta-thalassemia; however, the screening methods, the percentage of Hb A used as a cutoff for an indication of beta-thalassemia major, and the screening follow-up vary widely. The standardization of technical and reporting procedures may improve access to specialty care prior to severe complications, increase genetic counseling, and provide data needed to better understand the public health impact and clinical outcomes of beta-thalassemia in the United States.


2020 ◽  
Author(s):  
Ruoyan Sun ◽  
Henna Budhwani

BACKGROUND Though public health systems are responding rapidly to the COVID-19 pandemic, outcomes from publicly available, crowd-sourced big data may assist in helping to identify hot spots, prioritize equipment allocation and staffing, while also informing health policy related to “shelter in place” and social distancing recommendations. OBJECTIVE To assess if the rising state-level prevalence of COVID-19 related posts on Twitter (tweets) is predictive of state-level cumulative COVID-19 incidence after controlling for socio-economic characteristics. METHODS We identified extracted COVID-19 related tweets from January 21st to March 7th (2020) across all 50 states (N = 7,427,057). Tweets were combined with state-level characteristics and confirmed COVID-19 cases to determine the association between public commentary and cumulative incidence. RESULTS The cumulative incidence of COVID-19 cases varied significantly across states. Ratio of tweet increase (p=0.03), number of physicians per 1,000 population (p=0.01), education attainment (p=0.006), income per capita (p = 0.002), and percentage of adult population (p=0.003) were positively associated with cumulative incidence. Ratio of tweet increase was significantly associated with the logarithmic of cumulative incidence (p=0.06) with a coefficient of 0.26. CONCLUSIONS An increase in the prevalence of state-level tweets was predictive of an increase in COVID-19 diagnoses, providing evidence that Twitter can be a valuable surveillance tool for public health.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Margaret M. Padek ◽  
Stephanie Mazzucca ◽  
Peg Allen ◽  
Emily Rodriguez Weno ◽  
Edward Tsai ◽  
...  

Abstract Background Much of the disease burden in the United States is preventable through application of existing knowledge. State-level public health practitioners are in ideal positions to affect programs and policies related to chronic disease, but the extent to which mis-implementation occurring with these programs is largely unknown. Mis-implementation refers to ending effective programs and policies prematurely or continuing ineffective ones. Methods A 2018 comprehensive survey assessing the extent of mis-implementation and multi-level influences on mis-implementation was reported by state health departments (SHDs). Questions were developed from previous literature. Surveys were emailed to randomly selected SHD employees across the Unites States. Spearman’s correlation and multinomial logistic regression were used to assess factors in mis-implementation. Results Half (50.7%) of respondents were chronic disease program managers or unit directors. Forty nine percent reported that programs their SHD oversees sometimes, often or always continued ineffective programs. Over 50% also reported that their SHD sometimes or often ended effective programs. The data suggest the strongest correlates and predictors of mis-implementation were at the organizational level. For example, the number of organizational layers impeded decision-making was significant for both continuing ineffective programs (OR=4.70; 95% CI=2.20, 10.04) and ending effective programs (OR=3.23; 95% CI=1.61, 7.40). Conclusion The data suggest that changing certain agency practices may help in minimizing the occurrence of mis-implementation. Further research should focus on adding context to these issues and helping agencies engage in appropriate decision-making. Greater attention to mis-implementation should lead to greater use of effective interventions and more efficient expenditure of resources, ultimately to improve health outcomes.


2021 ◽  
Author(s):  
Margaret Padek ◽  
Stephanie Mazzucca ◽  
Peg Allen ◽  
Emily Rodriguez Weno ◽  
Edward Tsai ◽  
...  

Abstract Background: Much of the disease burden in the United States is preventable through application of existing knowledge. State-level public health practitioners are in ideal positions to affect programs and policies related to chronic disease, but the extent to which mis-implementation occurring with these programs is largely unknown. Mis-implementation refers to ending effective programs and policies prematurely or continuing ineffective ones. Methods: A 2018 comprehensive survey assessing the extent of mis-implementation and multi-level influences on mis-implementation was reported by state health departments (SHDs). Questions were developed from previous literature. Surveys were emailed to randomly selected SHD employees across the Unites States. Spearman’s correlation and multinomial logistic regression were used to assess factors in mis-implementation. Results: Half (50.7%) of respondents were chronic disease program managers or unit directors. Forty nine percent reported that programs their SHD oversees sometimes, often or always continued ineffective programs. Over 50% also reported that their SHD sometimes or often ended effective programs. The data suggest the strongest correlates and predictors of mis-implementation were at the organizational level. For example, the number of organizational layers impeded decision-making was significant for both continuing ineffective programs (OR=4.70; 95% CI=2.20, 10.04) and ending effective programs (OR=3.23; 95% CI=1.61, 7.40). Conclusion: The data suggest that changing certain agency practices may help in minimizing the occurrence of mis-implementation. Further research should focus on adding context to these issues and helping agencies engage in appropriate decision-making. Greater attention to mis-implementation should lead to greater use of effective interventions and more efficient expenditure of resources, ultimately to improve health outcomes.


2018 ◽  
Author(s):  
Romain Garnier ◽  
Ana I. Bento ◽  
Pejman Rohani ◽  
Saad B. Omer ◽  
Shweta Bansal

AbstractThere is scientific consensus on the importance of breastfeeding for the present and future health of newborns, in high- and low-income settings alike. In the United States, improving breast milk access is a public health priority but analysis of secular trends are largely lacking. Here, we used data from the National Immunization Survey of the CDC, collected between 2003 and 2016, to illustrate the temporal trends and the spatial heterogeneity in breastfeeding. We also considered the effect sizes of two key determinants of breastfeeding rates. We show that, while access to breast milk both at birth and at 6 months old has steadily increased over the past decade, large spatial disparities still remain at the state level. We also find that, since 2009, the proportion of households below the poverty level has become the strongest predictor of breastfeeding rates. We argue that, because variations in breastfeeding rates are associated with socio-economic factors, public health policies advocating for breastfeeding are still needed in particular in underserved communities. This is key to reducing longer term health disparities in the U.S., and more generally in high-income countries.


2021 ◽  
Vol 15 (10) ◽  
pp. e0009878
Author(s):  
Erin R. Whitehouse ◽  
Marissa K. Person ◽  
Catherine M. Brown ◽  
Sally Slavinski ◽  
Agam K. Rao ◽  
...  

Background An evaluation of postexposure prophylaxis (PEP) surveillance has not been conducted in over 10 years in the United States. An accurate assessment would be important to understand current rabies trends and inform public health preparedness and response to human rabies. Methodology/Principle findings To understand PEP surveillance, we sent a survey to public health leads for rabies in 50 U.S. states, Puerto Rico, Washington DC, Philadelphia, and New York City. Of leads from 54 jurisdictions, 39 (72%) responded to the survey; 12 reported having PEP-specific surveillance, five had animal bite surveillance that included data about PEP, four had animal bite surveillance without data about PEP, and 18 (46%) had neither. Although 12 jurisdictions provided data about PEP use, poor data quality and lack of national representativeness prevented use of this data to derive a national-level PEP estimate. We used national-level and state specific data from the Healthcare Cost & Utilization Project (HCUP) to estimate the number of people who received PEP based on emergency department (ED) visits. The estimated annual average of initial ED visits for PEP administration during 2012–2017 in the United States was 46,814 (SE: 1,697), costing upwards of 165 million USD. State-level ED data for initial visits for administration of PEP for rabies exposure using HCUP data was compared to state-level surveillance data from Maryland, Vermont, and Georgia between 2012–2017. In all states, state-level surveillance data was consistently lower than estimates of initial ED visits, suggesting even states with robust PEP surveillance may not adequately capture individuals who receive PEP. Conclusions Our findings suggest that making PEP a nationally reportable condition may not be feasible. Other methods of tracking administration of PEP such as syndromic surveillance or identification of sentinel states should be considered to obtain an accurate assessment.


2020 ◽  
Author(s):  
Praveen Suthaharan ◽  
Erin Reed ◽  
Pantelis Leptourgos ◽  
Joshua Kenney ◽  
Stefan Uddenberg ◽  
...  

The 2019 coronavirus (COVID-19) pandemic has made the world seem unpredictable. During such crises we can experience concerns that others might be against us, culminating perhaps in paranoid conspiracy theories. Here, we investigate paranoia and belief updating in an online sample (N=1,010) in the United States of America (U.S.A). We demonstrate the pandemic increased individuals’ self-rated paranoia and rendered their task-based belief updating more erratic. Local lockdown and reopening policies, as well as culture more broadly, markedly influenced participants’ belief-updating: an early and sustained lockdown rendered people’s belief updating less capricious. Masks are clearly an effective public health measure against COVID-19. However, state-mandated mask wearing increased paranoia and induced more erratic behaviour. Remarkably, this was most evident in those states where adherence to mask wearing rules was poor but where rule following is typically more common. This paranoia may explain the lack of compliance with this simple and effective countermeasure. Computational analyses of participant behaviour suggested that people with higher paranoia expected the task to be more unstable, but at the same time predicted more rewards. In a follow-up study we found people who were more paranoid endorsed conspiracies about mask-wearing and potential vaccines – again, mask attitude and conspiratorial beliefs were associated with erratic task behaviour and changed priors. Future public health responses to the pandemic might leverage these observations, mollifying paranoia and increasing adherence by tempering people’s expectations of other’s behaviour, and the environment more broadly, and reinforcing compliance.


2021 ◽  
Author(s):  
Charlie B. Fischer ◽  
Nedghie Adrien ◽  
Jeremiah J. Silguero ◽  
Julianne J. Hopper ◽  
Abir I. Chowdhury ◽  
...  

AbstractMask wearing has been advocated by public health officials as a way to reduce the spread of COVID-19. In the United States, policies on mask wearing have varied from state to state over the course of the pandemic. Even as more and more government leaders encourage or even mandate mask wearing, many citizens still resist the notion. Our research examines mask wearing policy and adherence in association with COVID-19 case rates. We used state-level data on mask wearing policy for the general public and on proportion of residents who stated they always wear masks in public. For all 50 states and the District of Columbia (DC), these data were abstracted by month for April ⍰ September 2020 to measure their impact on COVID-19 rates in the subsequent month (May ⍰ October 2020). Monthly COVID-19 case rates (number of cases per capita over two weeks) >200 per 100,000 residents were considered high. Fourteen of the 15 states with no mask wearing policy for the general public through September reported a high COVID-19 rate. Of the 8 states with at least 75% mask adherence, none reported a high COVID-19 rate. States with the lowest levels of mask adherence were most likely to have high COVID-19 rates in the subsequent month, independent of mask policy or demographic factors. Mean COVID-19 rates for states with at least 75% mask adherence in the preceding month was 109.26 per 100,000 compared to 249.99 per 100,000 for those with less adherence. Our analysis suggests high adherence to mask wearing could be a key factor in reducing the spread of COVID-19. This association between high mask adherence and reduced COVID-19 rates should influence policy makers and public health officials to focus on ways to improve mask adherence across the population in order to mitigate the spread of COVID-19.


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