bluuebunny/crossref_metadata_2025_split huggingface dataset:
Patient-Clinician Discordance in Perceptions of Treatment Risks and Benefits in Older Patients with Acute Myeloid Leukemia
Authors: El-Jawahri Areej , Nelson-Lowe Margaret , VanDusen Harry , Traeger Lara , Abel Gregory A. , Greer Joseph A. , Fathi Amir , Steensma David P. , LeBlanc Thomas W. , Li Zhigang , DeAngelo Daniel , Wadleigh Martha , Hobbs Gabriela , Foster Julia , Brunner Andrew , Amrein Philip , Stone Richard M. , Temel Jennifer S. 
Published: August 2018

AbstractBackgroundOlder patients (≥60 years) with acute myeloid leukemia (AML) face difficult decisions regarding treatment with “intensive” chemotherapy that carries significant toxicity for a small chance of a cure versus “nonintensive” chemotherapy to control the disease, but with fewer side effects. However, studies of how these patients understand the risks and benefits of such treatments are lacking.MethodsWe conducted a longitudinal study of older patients newly diagnosed with AML assessing patients’ (n = 100) and oncologists’ (n = 11) perceptions of treatment-related mortality at enrollment and prognosis at 1 month. We examined concordance between patients’ and oncologists’ perceptions using Cohen's kappa (κ &lt; 0.10 indicates little/no concordance).ResultsWe enrolled patients within 72 hours of initiating intensive (n = 50) or nonintensive (n = 50) chemotherapy. Whereas 91% of patients reported that they were “somewhat” to “extremely likely” to die from treatment, oncologists estimated that only 12% were at high risk of dying because of treatment (κ = −0.09). Ninety percent of patients reported that they were “somewhat” or “very likely” to be cured of their AML, whereas oncologists estimated this chance of cure for only 31% of patients (κ = 0.05). Among patients receiving intensive chemotherapy, 98% reported that they were “somewhat” or “very likely” to be cured, whereas their oncologists estimated this likelihood of cure for only 49% (κ = 0.04); among those receiving nonintensive chemotherapy and their clinicians, these proportions were 82% and 13%, respectively (κ = 0.03). Patients who indicated a lower likelihood of cure reported significantly higher depression symptoms (p = .03).ConclusionOlder patients with AML overestimate the risks and benefits of treatment. Interventions to facilitate communication and enhance patients’ understanding of the goals of therapy and treatment risk are needed.Implications for PracticeOlder patients with acute myeloid leukemia (AML) are confronted with challenging decisions regarding treatment with “intensive” chemotherapy that carries significant toxicity for a small chance of a cure versus “nonintensive” chemotherapy to control the disease, but with fewer side effects. A clear understanding of the likely outcome and risks of the various treatment strategies is essential for these patients to make informed decisions about their care. This article reports that older patients with AML overestimate both the risks and benefits of treatment and have substantial misperceptions about their prognosis. Interventions to enhance patients’ understanding of their prognosis and treatment risk are needed.
African mothers: Raising boys with haemophilia in the UK
Authors: Sugg Nicola 
Published: August 2018

Abstract
Disparities in haemophilia care between developed and developing countries persist despite the best efforts of the World Federation of Hemophilia (WFH). With limited availability of and access to coagulation factor concentrates in developing countries, people with haemophilia (PWH) are frequently left prone to lifethreatening bleeds. The experiences that sub- Saharan African mothers face raising a child with haemophilia are challenging. This study explores the difficulties faced by those who have moved to the United Kingdom, as well as their experiences in their countries of origin. Interviews were carried out with four mothers of children diagnosed with severe haemophilia A from Cameroon, the Democratic Republic of Congo, Nigeria and Somalia. Each of these mothers had the same experience of limited or no access to haemophilia care in their countries of origin. On moving to the UK, they experienced feelings of guilt about their ability to access treatment for their sons while others in their families are unable to access treatment. Awareness has been raised by these women and shared with African communities in the UK. In addition, two mothers have engaged in active fundraising in an attempt to establish haemophilia care in their home countries. This adds further to their need for support.
The impact on parents of having a child with haemophilia
Authors: Khair Kate , Chaplin Steve 
Published: August 2018

Abstract
Wider access to modern treatment of haemophilia has led to a growing interest in the family’s role in management. An increasing amount of research has sought to understand the psychosocial impact of living with a child with haemophilia. Understanding how such demands affect parents and families who live with the daily threat of bleeding can help health professionals to provide effective support. A literature review was undertaken with the aim of summarising the key findings from studies published since 2000. The literature review describes many common themes from observational studies that were generally consistent with those emerging from interviews of parents of children with haemophilia. Few intervention studies were identified. Overall, this evidence shows that raising a child with haemophilia can be challenging for parents and the family. Quality of life is impaired in the parents of a child with haemophilia and that many aspects of life are affected. However, providing care can also be rewarding and programmes of support, education and appropriate treatment evidently improve the well-being of parents and families.
Youth perspectives on genetic inheritance, carrier status and disclosure
Authors: Barrie Alpha-Umaru 
Published: August 2018

Abstract
Knowledge about genetic inheritance as a concept in children and young people with bleeding disorders is synonymous, in many ways, with other inherited genetic conditions. Children and young people have a more physiological understanding of inheritance, but may hold mistaken and inaccurate beliefs in understanding basic genetics. There are complex ethical and social problems in the genetic testing of youngsters with bleeding disorders to establish carrier status. Current guideline recommendations indicate circumstances where clear psychosocial and medical benefits can be demonstrated. However, children and young people have a reduced capacity to understand the tests and their implications, and in many cases family communication may impact the extent of disclosure of genetic risk factors. This paper explores the genetics of inherited bleeding disorders, including basic knowledge of the concept of inheritance and reproductive risks. Carrier status in children and young people will be considered, drawing on legal rulings that may shed light on best practice in establishing carrier status based on genetic testing. Communication patterns within families around inherited bleeding disorders and the complicated process of disclosure will also be discussed.
Does a patient’s personality style impact health outcomes?
Authors: McIntosh Kam 
Published: August 2018

Abstract
This case describes a young man with severe haemophilia B who uses the “avoiding” mode of behaviour, leading to isolation and reduced ambulation. Health care providers promoting health change behaviour were able to empower the patient to direct his care toward his desired outcomes. As his self-awareness increases, he begins to use another mode of behaviour: compromising. Thomas- Kilmann’s conflict management framework is a novel approach to bringing two sides together in a working partnership. This challenging case shows the balance between a patient’s self-care and symbiotic interaction with HCPs to achieve successful health outcomes.
Use of arteriovenous fistula in children with bleeding disorders
Authors: West Victoria 
Published: August 2018

Abstract
Haemophilia and associated bleeding disorders are chronic conditions that require easy, accessible, and reliable venous access for treatment. Peripheral venous access is traditionally the first option considered for prophylaxis. The initial introduction of prophylaxis to a child is during the first two years of life, and peripheral access can be problematic. Central venous catheters (CVC), for example port-a-caths, are widely used among this group; however, these devices require surgical insertion and are not without their own complications. Data were collected on venous access methods used at the paediatric centre at the Evelina London Children’s Hospital, where 242 children are registered at the comprehensive care centre, 48 of whom have a severe bleeding disorder. Of these 48, 27 have a CVC currently (PICC n=1, Port-a-Cath n=25, Hickman line n=1) and 3 have an arteriovenous fistula (AVF). Patient 1 is a 12 year-old boy with severe haemophilia A and an intracranial haemorrhage at the age of 9 months. He remains on prophylaxis and had an AVF created 5 years ago following repeated port-a-cath infections and poor venous access. Patient 2 is a 7 year-old boy with severe haemophilia B and an inhibitor, who has also had repeated port-a-cath infections. An AVF was constructed 2 years ago. Patient 3 is a 12 year-old girl with type III von Willebrand disease and an inhibitor. Due to need for regular factor treatment in the context of poor venous access, an AVF was formed. We have had a 100% success rate with all three AVFs at a follow-up period of 8-69 months. Our experience suggests AVF is a viable option of venous access in patients with haemophilia and other bleeding disorders, especially so for children with repeated CVC infections or poor peripheral venous access. However, this is not a straightforward option and further evidence on long-term use based on multicentre research will be beneficial in managing AVF in this group of patients.
Application of Tower Girder Asynchronous Construction Technology
Authors: Li Xiao , He Qiantu 
Published: August 2018

When constructing the tower beam in a traditional way, the tower beam will be simultaneously constructed with the tower column, it asks for a complicated construction procedure, difficult construction organization, long operating cycle, and highly increased construction cost. With the progress of technology, Asynchronous construction scheme of the tower column and tower beam is adopted and applied. This paper is based on the case of asynchronous construction of the H-type cable tower and beam of the six large-span Ao jiang Bridges.
Apresentação
Authors: Corrêa Letícia Maria Sicuro , Françozo Edson 
Published: August 2018

Os artigos do presente volume temático correspondem a desenvolvimentos de trabalhos apresentados na reunião do GT de Psicolingüística da ANPOLL, por ocasião do XV Encontro Nacional, realizado na Universidade Federal Fluminense, em junho de 2000. O campo da Psicolingüística apresenta-se bastante diversificado no Brasil, seja em função de interesses temáticos ou de abordagens teóricas. Os encontros da ANPOLL constituem um momento privilegiado para que tenhamos uma visão integrada do estado da pesquisa em diferentes subáreas, sob diferentes recortes teóricos, assim como para que possamos discutir perspectivas para o desenvolvimento desse campo, como um todo, no país.
Restrições gradientes sobre relações entre vogais pré-tônicas e tônicas no léxico do português brasileiro
Authors: Albano Eleonora Cavalcante 
Published: August 2018

This paper contends that the two competing "rules" that the literature on Portuguese morphophonology has claimed to apply to the verb paradigm, namely, vowel height harmony and vowel lowering, are, in fact, phonotactic restrictions that apply, in a categorical fashion, to the inflected verb stem and, in a gradient fashion, to the non-inflected verb stem. At least in Brazilian Portuguese, the non-inflected verb stem is consistent with the inflected verb stem in that lowering predominates in both in the first conjugation and harmony predominates in both in the second and third conjugation. Lowering is in turn consistent with other versions of OCP which cut across all grammatical categories. The findings are interpreted in light of Acoustic-Articulatory Phonology (Albano 2001), which predicts, on grounds of facilitation of decoding of acoustic-to-articulatory relations, that stress tends to attract low vowels except where vowel quality is otherwise predictable.
Padrões iniciais na aquisição do sistema de sons do português: características universais e específicas
Authors: Teixeira Elizabeth Reis 
Published: August 2018

Adopting a strictly motor approach to linguistic organization, the theoretical proposal called Molde e Conteúdo (Davies & Macneilage 1995; Macneilage & Davies 1966) argues that the first child production akin to adult speech – canonical babbling – can be seen as a motor correlate of the molde silábico. Moldes constitute a rhythmic basis catalyzing specific syllabic or segmental sequences. The independent motor control of such elements emerges gradually from jaw/tongue synergies with which the child initiates a type of vocal production similar to the adult’s. In the acquisition of speech production skills, then, changes in the quality of sounds in an utterance are initially based in changes in the amplitude of the jaw opening/closing cycle, i.e., they determine intra-syllabic organization. Syllables sequences, in turn, comprise vocalic and consonantal qualities produced in homorganic articulation places (i.e. front consonants with front vowels; back consonants with back vowels), as demonstrated child data derived from six different linguistic communities – English, Swedish, French, Japanese (in the Stanford database), Brazilian Portuguese (Teixeira & Davies 1999) e Equatorial Quichua (Gildersleeve-Neumann, doctoral dissertation in preparation, U. Texas, Austin). In general, the data on Brazilian Portuguese acquisition are comparable to production universal patterns reported for children in different languages, but also show specific characteristics due to the ambient language pressure.
The Economic Value of Informal Caregiving for Persons With Dementia: Results From 38 States, the District of Columbia, and Puerto Rico, 2015 and 2016 BRFSS
Authors: Rabarison Kristina M. , Bouldin Erin D. , Bish Connie L. , McGuire Lisa C. , Taylor Christopher A. , Greenlund Kurt J. 
Published: August 2018

Objectives. To estimate the economic value from a societal perspective of informal caregiving of persons with dementia in 38 states, the District of Columbia, and Puerto Rico. Methods. Using a cost replacement method and data from the 2015 and 2016 Behavioral Risk Factor Surveillance System caregiver module, the US Bureau of Labor Statistics May 2016 Occupation Profiles, and the US Department of Labor, we estimated the number and economic direct cost of caregiving hours. Results. An estimated 3.2 million dementia caregivers provided more than 4.1 billion hours of care, with an average of 1278 hours per caregiver. The median hourly value of dementia caregiving was $10.28. Overall, we valued these caregiving hours at $41.5 billion, with an average of $13 069 per caregiver. Conclusions. Caregivers of persons with dementia provide care that has important economic implications. Without these efforts, many people would either not receive needed care or have to pay for that support. Surveillance data can be used to estimate the contributions of informal caregivers and the economic value of the care they provide.
The Belmont Report at 40: Reckoning With Time
Authors: Adashi Eli Y. , Walters LeRoy B. , Menikoff Jerry A. 
Published: August 2018

It was the summer of 1972 when a stunned nation first learned of the infamous Tuskegee Syphilis Study, during which hundreds of poor, disease-stricken black men from Macon County Alabama, had been deliberately left untreated for 40 years.Coming on the heels of multiple, earlier examples of unethical human experimentation, the Tuskegee Syphilis Study made it plain that the moral foundation of human subject research was in desperate need of repair. Blind reliance on the Nuremberg Code and the Declaration of Helsinki was no longer going to suffice.It was against this backdrop that Congress resolved to act. Numerous hearings and multiple spirited discussions later, an agreement was struck to constitute the “Commission.” The outgrowth of a retreat held at the Smithsonian Institution’s Belmont Conference Center, the Belmont Report lays out a principled analytical framework to “guide the resolution of ethical problems arising from research involving human subjects.” Durable and ever-present, the Belmont Report, which is the foundational document that reset the ethics of human subject research, must now reckon with all-important novel issues of the day that could not have been foreseen by its drafters.
Mass Casualty Shooting Venues, Types of Firearms, and Age of Perpetrators in the United States, 1982–2018
Authors: Brown Joshua D. , Goodin Amie J. 
Published: August 2018

Objectives. To evaluate the association between mass casualty shooting venues, types of firearms, and the age of perpetrators in the United States. Methods. We analyzed data on mass casualty (≥ 3 fatalities) shootings for August 1982 through February 14, 2018. We describe data overall, specifically by school venues and the weapons used. We categorized perpetrators by ages of younger than 18 years, 18 to 20 years, and 21 years and older. We described the number of victims (fatalities plus injuries) by medians and average per event. Results. Of 97 events, the median perpetrator age was 35 years and 21 years for school shootings. Four of 16 school events were committed by those aged 18 to 20 years, and all of those events included long guns. Victims of perpetrators aged 18 to 20 years made up 9.0% of all victims and 31.1% of victims of school shootings. Conclusions. Persons aged 18 to 20 years perpetrated about 1 in 8 shootings, accounting for about 1 in 3 victims of school shootings. Public Health Implications. Legislation to prevent mass casualty events must be multifaceted, including age restrictions, restrictions on certain types of firearms, and improved resources for mental health, with particular emphasis on mental health and firearm restrictions for young adults.
Modeling Health Benefits and Harms of Public Policy Responses to the US Opioid Epidemic
Authors: Pitt Allison L. , Humphreys Keith , Brandeau Margaret L. 
Published: August 2018

Objectives. To estimate health outcomes of policies to mitigate the opioid epidemic. Methods. We used dynamic compartmental modeling of US adults, in various pain, opioid use, and opioid addiction health states, to project addiction-related deaths, life years, and quality-adjusted life years from 2016 to 2025 for 11 policy responses to the opioid epidemic. Results. Over 5 years, increasing naloxone availability, promoting needle exchange, expanding medication-assisted addiction treatment, and increasing psychosocial treatment increased life years and quality-adjusted life years and reduced deaths. Other policies reduced opioid prescription supply and related deaths but led some addicted prescription users to switch to heroin use, which increased heroin-related deaths. Over a longer horizon, some such policies may avert enough new addiction to outweigh the harms. No single policy is likely to substantially reduce deaths over 5 to 10 years. Conclusions. Policies focused on services for addicted people improve population health without harming any groups. Policies that reduce the prescription opioid supply may increase heroin use and reduce quality of life in the short term, but in the long term could generate positive health benefits. A portfolio of interventions will be needed for eventual mitigation.
Public Program Enrollment Following US State Medicaid Expansion and Outreach
Authors: Lanese Bethany G. , Fischbein Rebecca , Furda Chelsea 
Published: August 2018

Objectives. To examine the joint impact of states’ Medicaid expansion and participation in Medicaid enrollment outreach at the take-up of other means-tested public programs (Women, Infants, and Children [WIC], Supplemental Nutrition Assistance Program [SNAP]). Methods. Data were used from the American Community Survey, WIC, and SNAP. We used difference-in-differences analyses to compare the combined impact of Medicaid expansion and enrollment outreach on program enrollment. Results. Enrollment in means-tested programs decreased after 2014, regardless of Medicaid expansion and outreach status. However, gaps in enrollment among states that both expanded Medicaid and conducted outreach, compared with states that did neither, increased after expansion of SNAP and WIC enrollment (10.15% and 4.57%, respectively) and favored those states that did both. Conclusions. States that both expanded Medicaid and conducted Medicaid enrollment outreach experienced smaller decreases in SNAP and WIC enrollment in comparison with other states. Moreover, enrollment in SNAP has shown to reduce health care expenditures. Greater collaboration among public programs, such as streamlining eligibility data and concerted outreach efforts, is one of the achievements of the Affordable Care Act that should be continued.
A Clinical Test to Measure Airborne Microbial Contamination on the Sterile Field During Total Joint Replacement
Authors: Harp John H. 
Published: August 2018

Background:
Airborne microbe-carrying particles in the operating-room environment during total joint replacement are a risk factor for periprosthetic joint infection. The present study focuses on a simple environmental test, based on practices used in aseptic cleanrooms, to quantify the deposition of microbe-carrying particles onto the sterile field.

Methods:
Settle plates are exposed Petri dishes. A settle plate test system and sampling plan were developed from current practices used in aseptic manufacturing. A pilot study evaluated this system in an orthopaedic operating room during 22 total knee and hip arthroplasties. The microbial deposition total (MDT), expressed in colonies/m2, is proposed as an outcome variable to report airborne sterile-field contamination as measured with settle plates. Two reference MDT levels were developed: (1) an upper limit of 450, corresponding with the ultraclean air definition of 10 colonies/m3, and (2) a target level of 100, corresponding with 1 colony/m3. These levels also correspond with widely used limits in aseptic cleanrooms and controlled environments.

Results:
High MDT standard deviations were noted. Ninety-one percent (95% confidence interval, 71.0% to 98.7%) of wound zone MDT levels were within the upper limit. Twenty-seven percent (95% confidence interval, 12.9% to 48.4%) of wound zone levels were within the target level.

Conclusions:
Settle plates are a feasible technique to test environmental levels of microbe-carrying particles on sterile fields during total joint replacement for scientific and environmental quality studies.

Clinical Relevance:
This settle plate operating-room environmental test can be used in future research to validate the presence of actual ultraclean-air conditions during periprosthetic joint infection outcome studies. Surgeons also can use this test to measure intraoperative airborne microbe-carrying-particle sterile-field contamination and compare it with ultraclean-air reference levels for environmental quality-control programs.