60 research outputs found

    The return of first-degree relatives of hypertrophic cardiomyopathy patients for HCM-related follow-up

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    Thesis (M.A.)--Boston UniversityHypertrophic cardiomyopathy is an inherited heart disease characterized by unexplained thickening of the left ventricle. Given its autosomal dominant method of inheritance, all first-degree family members of an HCM patient have a 50% risk of inheriting the disease. Since family members are at high risk for disease, we consider HCM a disease of not just a single patient, but of a whole family. Medical guidelines propose that all first-degree family members seek HCM-related follow-up. In most cases the follow-up involves longitudinal clinical screening. In some cases genetic testing is also indicated for relatives. In an observational study of 361 HCM patients and family members, who were seen at a specialized HCM clinic in the Cardiovascular Genomics Center at Brigham and Women’s Hospital in Boston, MA, we show that only 39% of relatives pursued any HCM-related follow-up. In general, children of HCM patients were more likely to seek follow-up than siblings or parents of HCM patients. In cases where genetic testing was indicated for family members, relatives were more likely to seek clinical than genetic screening. Yet, a large proportion did seek both types of testing. Genetic testing results seemed to influence the return by relatives for clinical follow-up. When a disease-causing genetic variant was identified in one individual, family members were more likely to have HCM-related follow-up than when no genetic variant was identified or no genetic testing was performed. This study provides initial insights into the causes for the low overall rate of familial follow-up for an inherited disorder. We recognize that relatives are lost to follow-up at the stage when the initial patient must transmit information about follow-up to his relatives. Of greater concern, our data suggests that patients may be misinterpreting negative genetic test results, which may reflect a mutation in a gene that has yet to be discovered, despite appropriate genetic counseling. Determining what factors influence familial follow-up allows us to reassess current processes, so as to ensure that more at-risk family members receive evaluations. Providing clinical care to the entire HCM population is important for treatment of symptoms and prevention of sudden cardiac death, the most devastating outcome caused by HCM. With the use of genetic testing we are also able to identify HCM patients before any symptoms arise. Studying this asymptomatic population allows us to learn more about disease biology and progression with the end goal of finding a medical therapy to reverse or prevent HCM

    Anchoring Communities Throughout COVID-19: Results from the 2020 Healthy Food in Health Care Survey in New England.

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    Health Care Without Harm has been surveying their network of facilities since 2009. In 2020 the effort was expanded to include the full population health care facilities throughout New England. This new iteration of the Healthy Food in Health Care Survey focused on hospitals\u27 foodservice operations response to COVID-19 and contributions as anchor institutions in their communities. To supplement the survey results, three in-depth case studies demonstrate various experiences throughout the pandemic and highlight the motivations and ways these facilities successfully navigated the incredible strain put on the health care system while still being an essential community resource. The finding suggests that health care facilities played an important role in supporting their communities beyond procurement by establishing new initiatives that promoted food access and local producers. Based on the survey and case-study findings, recommendations and key takeaways for stakeholders hoping to increase their engagement as an anchor institution were developed. These recommendations highlight the resources used to support food access initiatives throughout COVID-19 and further develop relationships with local producers

    Theory of Mind in Deaf and Hard of Hearing Children: A Systematic Review

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    Effective communication requires a level of shared understanding. Jones (2015) observes "an essential element to successful communication is the ability to make inferences about the psychological states of others and to predict or explain their behaviour with reference to their mental states, feelings, beliefs and desires" . Theory of Mind (ToM) is the ability to understand that the mental state of others can differ from our own. Many authors attribute the process of ToM to cognitive-conceptual changes tied to language development that occurs during the preschool years (Milligan, Astington, & Dack, 2007). As a whole, studies have found most typically developing children succeed at ToM tasks by 4-5 years of age (Leverez et al., 2012). However, Leverez et al. (2012) reports it is well established that children with severe-profound hearing loss exhibit a delay of 5-7 years in their ability to grasp beliefs of others. Currently there exists a moderate body of research examining ToM development in hard of hearing children. However, studies differ widely in terms of age of intervention, language abilities, lack of sample homogeneity, and quality of materials used

    Art, Artifact, Archive: African American Experiences in the Nineteenth Century

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    Angelo Scarlato’s extraordinary and vast collection of art and artifacts related to the Civil War, and specifically to the Battle of Gettysburg, the United States Colored Troops, slavery and the African American struggle for emancipation, citizenship and freedom has proved to be an extraordinary resource for Gettysburg College students. The 2012-14 exhibition in Musselman Library’s Special Collections, curated by Lauren Roedner ’13, entitled Slaves, Soldiers, Citizens: African American Artifacts of the Civil War Era and its corresponding catalogue provided a powerful and comprehensive historical narrative of the period. This fall, students in my course at Gettysburg College “Art and Public Policy”—Diane Brennan, Maura Conley, Abigail Conner, Nicole Conte, Victoria Perez-Zetune, Savannah Rose, Kaylyn Sawyer, Caroline Wood and Zoe Yeoh—selected additional objects of material and print culture from Angelo’s private collection and drew from Lauren’s expertise for the exhibition Art, Artifact, Archive: African American Experiences in the Nineteenth Century to investigate public representations of a newly freed population as well as their more personal perspectives. [excerpt]https://cupola.gettysburg.edu/artcatalogs/1015/thumbnail.jp

    Reducing the Risk of Pressure Ulcers in Older Adults

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    In the world of advancing medicine and technology, healthcare continues to evolve and adapt. However, like any evolutionary process, there are flaws. For example, prevalence of pressure ulcers in the elderly community continues to remain an ongoing issue. This leads us to ask this question: What is the effect of efficient skin care on reducing the risk of ulcer development in older adults? The continued incidence of pressure ulcers in the elderly demonstrates that adequate research has not been performed in order to prevent the formation of pressure ulcers. In approaching this question, we began by researching the main factors of ulcer development and condensing them into generalized areas of focus, such as skin care and nursing attitudes. We conducted a systematic review of literature related to the formation of pressure ulcers in the elderly. Through analysis of preventative methods regarding ulcer formation, we created a practice protocol to emphasize the importance of quality skin care in the elderly community

    Are consumers in developing countries willing to pay for aquaculture food safety certification? Evidence from a field experiment in Nigeria

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    Many developing countries face challenges in managing food safety risks associated with consumption of animalsource foods. Efforts to address these challenges increasingly recognize the role of certification in agri-food systems governance. Understanding consumers' willingness to pay (WTP) for food safety certification is fundamental to determining the appropriate design and implementation of programs to reduce the burden of foodborne illnesses in developing countries. To address this need, we implemented a framed field experiment with consumers of eight farm-raised African Catfish (Clarias gariepinus) products varying in certification status (safety certified versus uncertified) and product forms (live versus smoked) to examine their WTP for food safety certification in Nigeria. We applied a mixed-effects model to account for the hierarchical structure of the data with one participant entering multiple bids, and estimated a model with participant fixed effects as a robustness check. We found that consumers were willing to pay between 3.1% and 18.8% more for fish certified as safe compared to uncertified fish. Furthermore, there was an asymmetry in food safety certification valuation, with consumers paying significant premiums for high-value larger-sized certified live and smoked catfish, but not smaller-sized certified live and smoked catfish. The results are robust to a specification in which consumer fixed effects are included. Our findings suggest there exists consumer demand for certification programs to upgrade the food safety standards of higher-value fish products in Nigeria's domestic markets. Lower-value fish products typically consumed by lower-income consumers show less potential for certification. Alternative safety regulation is needed to ensure safety practices for low-end fish products

    CAPSTONE: A Summary of a Highly Successful Mission in the Cislunar Environment

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    NASA, Advanced Space, Terran Orbital, Rocket Lab, Stellar Exploration, JPL, the Space Dynamics Lab, and Tethers Unlimited have partnered to successfully develop, launch, and operate the Cislunar Autonomous Positioning System Technology Operations and Navigation Experiment (CAPSTONE) mission, which is serving as a pathfinder for Near Rectilinear Halo Orbit (NHRO) operations around the Moon. This low-cost, high-value mission has demonstrated an efficient, low-energy orbital transfer to the Moon and a successful insertion into the Near Rectilinear Halo Orbit (NRHO), the intended orbit for NASA\u27s Gateway lunar orbital platform. The mission is now demonstrating operations within the NRHO that ultimately will serve to reduce risk and validate key exploration operations and technologies required for the future success of NASA\u27s lunar exploration plans, including the planned human return to the lunar surface. Over the next 9+ months, CAPSTONE will continue to validate these key operations and navigation technologies required for the success of NASA\u27s lunar exploration plans. This paper will include an overview of the current mission status, lessons learned from the launch, transfer, and insertion into the NRHO, a summary of the challenges encountered thus far, and an overview of the successful mission operations technology demonstrations thus far

    Determining motivation to engage in safe food handling behaviour

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    Purpose: To apply the protection motivation theory to safe food handling in order to determine the efficacy of this model for four food handling behaviours: cooking food properly, reducing cross-contamination, keeping food at the correct temperature and avoiding unsafe foods. Design: A cross-sectional approach was taken where all protection motivation variables: perceived severity, perceived vulnerability, self-efficacy, response efficacy, and protection motivation, were measured at a single time point. Findings: Data from 206 participants revealed that the model accounted for between 40 and 48% of the variance in motivation to perform each of the four safe food handling behaviours. The relationship between self-efficacy and protection motivation was revealed to be the most consistent across the four behaviours. Implications: While a good predictor of motivation, it is suggested that protection motivation theory is not superior to other previously applied models, and perhaps a model that focuses on self-efficacy would offer the most parsimonious explanation of safe food handling behaviour, and indicate the most effective targets for behaviour change interventions. Originality: This is the first study to apply and determine the efficacy of protection motivation theory in the context of food safety
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